Prior Research
The Rare Diseases Clinical Research Network was established in 2003 by the National Institutes of Health (NIH). Through four grant cycles, the RDCRN has funded significant research into many rare diseases conducted by multiple research teams. Listed below are scientific publications published by consortia funded in previous grant cycles:
Advancing Research & Treatment for Frontotemporal Lobar Degeneration
Journal Articles
- Lee SE, Khazenzon AM, Trujillo AJ, et al. Altered network connectivity in frontotemporal dementia with C9orf72 hexanucleotide repeat expansion. Brain. Nov 2014;137(Pt 11):30473060. PMID: 25273996, PMCID: PMC4208465
- Sha SJ, Ghosh PM, Lee SE, et al. Predicting amyloid status in corticobasal syndrome using modified clinical criteria, magnetic resonance imaging and fluorodeoxyglucose positron emission tomography. Alzheimers Res Ther. 2015;7(1):8. PMID: 25733984, PMCID: PMC4346122
- Finger EC, MacKinley J, Blair M, et al. Oxytocin for frontotemporal dementia: a randomized dose-finding study of safety and tolerability. Neurology. Jan 13 2015;84(2):174-181. PMID: 25503617, PMCID: PMC4336088
- Fiandaca MS, Kapogiannis D, Mapstone M, et al. Identification of preclinical Alzheimer's disease by a profile of pathogenic proteins in neurally derived blood exosomes: A case-control study. Alzheimer's & Dementia: The Journal of the Alzheimer's Association. Jun 2015;11(6):600-607 e601. PMID: 25130657, PMCID: PMC4329112
- Iglesias JE, Van Leemput K, Bhatt P, et al. Bayesian segmentation of brainstem structures in MRI. Neuroimage. Jun 2015;113:184-195. PMID: 25776214, PMCID: PMC4434226
- Block NR, Sha SJ, Karydas AM, et al. Frontotemporal Dementia and Psychiatric Illness: Emerging Clinical and Biological Links in Gene Carriers. Am J Geriatr Psychiatry. Jun 21 2015. PMID: 26324540, PMCID: PMC4686378
- McCarter SJ, Tippmann-Peikert M, Sandness DJ, et al. Neuroimaging-evident lesional pathology associated with REM sleep behavior disorder. Sleep Medicine. Dec 2015;16(12):1502-1510. PMID: 26611948
- Boman A, Svensson S, Boxer A, et al. Distinct Lysosomal Network Protein Profiles in Parkinsonian Syndrome Cerebrospinal Fluid. Journal of Parkinson's Disease. 2016;6(2):307-315. PMID: 27061067, PMCID: PMC4927933
- Dutt S, Binney RJ, Heuer HW, et al. Progression of brain atrophy in PSP and CBS over 6 months and 1 year. Neurology. 2016;87(19):2016-2025. PMID: 27742814, PMCID: PMC5109951
- Espay AJ, Bonato P, Nahab FB, et al. Technology in Parkinson's disease: Challenges and opportunities. Mov Disord. 2016;31(9):1272-1282. PMID: 27125836, PMCID: PMC5014594
- Goetzl EJ, Kapogiannis D, Schwartz JB, et al. Decreased synaptic proteins in neuronal exosomes of frontotemporal dementia and Alzheimer's disease. FASEB J. 2016;30(12):4141-4148. PMID: 27601437, PMCID: PMC5102122
- Hewer S, Varley S, Boxer AL, Paul E, Williams DR. Minimal clinically important worsening on the progressive supranuclear Palsy Rating Scale. Mov Disord. 2016;31(10):1574-1577. PMID: 27324431, PMCID: PMC5215805
- Litvan I, Lees PS, Cunningham CR, et al. Environmental and occupational risk factors for progressive supranuclear palsy: Case-control study. Mov Disord. 2016;31(5):644-652. PMID: 26854325, PMCID: PMC4861658
- Miller ZA, Sturm VE, Camsari GB, et al. Increased prevalence of autoimmune disease within C9 and FTD/MND cohorts: Completing the picture. Neurology(R) Neuroimmunology & Neuroinflammation. 2016;3(6):e301. PMID: 27844039, PMCID: PMC5087253
- Nandipati S, Litvan I. Environmental Exposures and Parkinson's Disease. Int J Environ Res Public Health. 2016;13(9). PMID: 27598189, PMCID: PMC5036714
- Onyike CU. Psychiatric Aspects of Dementia. Continuum (Minneapolis, Minn). 2016;22(2 Dementia):600-614. PMID: 27042910, PMCID: PMC5390928
- Santos-Santos MA, Mandelli ML, Binney RJ, et al. Features of Patients With Nonfluent/Agrammatic Primary Progressive Aphasia With Underlying Progressive Supranuclear Palsy Pathology or Corticobasal Degeneration. JAMA neurology. 2016;73(6):733-742. PMID: 27111692, PMCID: PMC4924620
- Stamelou M, Schope J, Wagenpfeil S, et al. Power calculations and placebo effect for future clinical trials in progressive supranuclear palsy. Mov Disord. 2016;31(5):742-747. PMID: 26948290, PMCID: PMC5289149
- Tsai RM, Boxer AL. Therapy and clinical trials in frontotemporal dementia: past, present, and future. J Neurochem. 2016;138 Suppl 1:211-221. PMID: 27306957, PMCID: PMC5217534
- Walsh CM, Ruoff L, Varbel J, et al. Rest-activity rhythm disruption in progressive supranuclear palsy. Sleep Medicine. 2016;22:50-56. PMID: 27544836, PMCID: PMC4996365
- Zhang Y, Walter R, Ng P, et al. Progression of Microstructural Degeneration in Progressive Supranuclear Palsy and Corticobasal Syndrome: A Longitudinal Diffusion Tensor Imaging Study. PLoS ONE. 2016;11(6):e0157218. PMID: 27310132, PMCID: PMC4911077
- Rojas JC, Boxer AL. Neurodegenerative disease in 2015: Targeting tauopathies for therapeutic translation. Nature reviews. Neurology. Feb 2016;12(2):74-76. PMID: 26794651, PMCID: PMC5221610
- Bang J, Lobach IV, Lang AE, et al. Predicting disease progression in progressive supranuclear palsy in multicenter clinical trials. Parkinsonism Relat Disord. Apr 18 2016. PMID: 27172829, PMCID: PMC4914418
- Tsai RM, Lobach I, Bang J, et al. Clinical correlates of longitudinal brain atrophy in progressive supranuclear palsy. Parkinsonism Relat Disord. Apr 24 2016. PMID: 27132501, PMCID: PMC4914401
- Besser LM, Litvan I, Monsell SE, et al. Mild cognitive impairment in Parkinson's disease versus Alzheimer's disease. Parkinsonism Relat Disord. Jun 2016;27:54-60. PMID: 27089852, PMCID: PMC4887313
- Bejanin A, Schonhaut DR, La Joie R, et al. Tau pathology and neurodegeneration contribute to cognitive impairment in Alzheimer's disease. Brain. 2017;140(12):3286-3300. PMID: 29053874
- Brown JA, Hua AY, Trujllo A, et al. Advancing functional dysconnectivity and atrophy in progressive supranuclear palsy. NeuroImage Clinical. 2017;16:564-574. PMID: 28951832, PMCID: PMC5605489
- Chen J, Yu JT, Wojta K, et al. Genome-wide association study identifies MAPT locus influencing human plasma tau levels. Neurology. 2017;88(7):669-676. PMID: 28100725, PMCID: PMC5317386
- Elahi FM, Marx G, Cobigo Y, et al. Longitudinal white matter change in frontotemporal dementia subtypes and sporadic late onset Alzheimer's disease. NeuroImage Clinical. 2017;16:595-603. PMID: 28975068, PMCID: PMC5614750
- Fernandez-Fournier M, Perry DC, Tartaglia MC, et al. Precipitous Deterioration of Motor Function, Cognition, and Behavior. JAMA Neurology. 2017;74(5):591-596. PMID: 28264087, PMCID: PMC5600817
- Gendron TF, Chew J, Stankowski JN, et al. Poly(GP) proteins are a useful pharmacodynamic marker for C9ORF72-associated amyotrophic lateral sclerosis. Sci Transl Med. 2017;9(383). PMID: 28356511, PMCID: PMC5576451
- Gerstenecker A, Roberson ED, Schellenberg GD, et al. Genetic influences on cognition in progressive supranuclear palsy. Mov Disord. 2017;32(12):1764-1771. PMID: 29076559, PMCID: PMC5818145
- Hoglinger GU, Respondek G, Stamelou M, et al. Clinical diagnosis of progressive supranuclear palsy: The movement disorder society criteria. Mov Disord. 2017. PMID: 28467028, PMCID: PMC5516529
- Hoglinger GU, Schope J, Stamelou M, et al. Longitudinal magnetic resonance imaging in progressive supranuclear palsy: A new combined score for clinical trials. Mov Disord. 2017. PMID: 28436538, PMCID: PMC5808453
- Lapid MI, Kuntz KM, Mason SS, et al. Efficacy, Safety, and Tolerability of Armodafinil Therapy for Hypersomnia Associated with Dementia with Lewy Bodies: A Pilot Study. Dement Geriatr Cogn Disord. 2017;43(5-6):269-280. PMID: 28448998, PMCID: PMC5503747
- Lopez A, Lee SE, Wojta K, et al. A152T tau allele causes neurodegeneration that can be ameliorated in a zebrafish model by autophagy induction. Brain. 2017;140(4):1128-1146. PMID: 28334843, PMCID: PMC5382950
- Perry DC, Brown JA, Possin KL, et al. Clinicopathological correlations in behavioural variant frontotemporal dementia. Brain. 2017;140(12):3329-3345. PMID: 29053860
- Respondek G, Kurz C, Arzberger T, et al. Which ante mortem clinical features predict progressive supranuclear palsy pathology? Mov Disord. 2017;32(7):995-1005. PMID: 28500752, PMCID: PMC5543934
- Roe CM, Barco PP, Head DM, et al. Amyloid Imaging, Cerebrospinal Fluid Biomarkers Predict Driving Performance Among Cognitively Normal Individuals. Alzheimer Dis Assoc Disord. 2017;31(1):69-72. PMID: 27128959, PMCID: PMC5085874
- Scherling CS, Zakrzewski J, Datta S, et al. Mistakes, Too Few to Mention? Impaired Self-conscious Emotional Processing of Errors in the Behavioral Variant of Frontotemporal Dementia. Frontiers in Behavioral Neuroscience. 2017;11:189. PMID: 29089874, PMCID: PMC5651000
- Schonhaut DR, McMillan CT, Spina S, et al. 18 F-flortaucipir tau positron emission tomography distinguishes established progressive supranuclear palsy from controls and Parkinson disease: A multicenter study. Ann Neurol. 2017;82(4):622-634. PMID: 28980714, PMCID: PMC5665658
- Seo SW, Ayakta N, Grinberg LT, et al. Regional correlations between [(11)C]PIB PET and postmortem burden of amyloid-beta pathology in a diverse neuropathological cohort. NeuroImage Clinical. 2017;13:130-137. PMID: 27981028, PMCID: PMC5144753
- Sha SJ, Miller ZA, Min SW, et al. An 8-week, open-label, dose-finding study of nimodipine for the treatment of progranulin insufficiency from GRN gene mutations. Alzheimer's & Dementia (New York, N Y). 2017;3(4):507-512. PMID: 29124108, PMCID: PMC5671622
- Spina S, Schonhaut DR, Boeve BF, et al. Frontotemporal dementia with the V337M MAPT mutation: Tau-PET and pathology correlations. Neurology. 2017;88(8):758-766. PMID: 28130473, PMCID: PMC5344079
- Spinelli EG, Mandelli ML, Miller ZA, et al. Typical and atypical pathology in primary progressive aphasia variants. Ann Neurol. 2017;81(3):430-443. PMID: 28133816, PMCID: PMC5421819
- Whitwell JL, Hoglinger GU, Antonini A, et al. Radiological biomarkers for diagnosis in PSP: Where are we and where do we need to be? Mov Disord. 2017;32(7):955-971. PMID: 28500751, PMCID: PMC5511762
- Yokoyama JS, Karch CM, Fan CC, et al. Shared genetic risk between corticobasal degeneration, progressive supranuclear palsy, and frontotemporal dementia. Acta Neuropathol. 2017;133(5):825-837. PMID: 28271184, PMCID: PMC5429027
- Bjorkhem I, Patra K, Boxer AL, Svenningsson P. 24S-Hydroxycholesterol Correlates With Tau and Is Increased in Cerebrospinal Fluid in Parkinson's Disease and Corticobasal Syndrome. Frontiers in Neurology. 2018;9:756. PMID: 30245667, PMCID: PMC6137204
- Chen JA, Chen Z, Won H, et al. Joint genome-wide association study of progressive supranuclear palsy identifies novel susceptibility loci and genetic correlation to neurodegenerative diseases. Mol Neurodegener. 2018;13(1):41. PMID: 30089514, PMCID: PMC6083608
- Iaccarino L, Tammewar G, Ayakta N, et al. Local and distant relationships between amyloid, tau and neurodegeneration in Alzheimer's Disease. NeuroImage Clinical. 2018;17:452-464. PMID: 29159058, PMCID: PMC5684433
- Ljubenkov PA, Staffaroni AM, Rojas JC, et al. Cerebrospinal fluid biomarkers predict frontotemporal dementia trajectory. Annals of Clinical and Translational Neurology. 2018;5(10):1250-1263. PMID: 30349860, PMCID: PMC6186942
- McKeever PM, Schneider R, Taghdiri F, et al. MicroRNA Expression Levels Are Altered in the Cerebrospinal Fluid of Patients with Young-Onset Alzheimer's Disease. Mol Neurobiol. 2018;55(12):8826-8841. PMID: 29603092, PMCID: PMC6208843
- Ossenkoppele R, Rabinovici GD, Smith R, et al. Discriminative Accuracy of [18F]flortaucipir Positron Emission Tomography for Alzheimer Disease vs Other Neurodegenerative Disorders. JAMA. 2018;320(11):1151-1162. PMID: 30326496
- Pottier C, Zhou X, Perkerson RB, 3rd, et al. Potential genetic modifiers of disease risk and age at onset in patients with frontotemporal lobar degeneration and GRN mutations: a genome-wide association study. Lancet Neurol. 2018;17(6):548-558. PMID: 29724592, PMCID: PMC6237181
- Shoeibi A, Litvan I. Prominent tongue and jaw tremor in a patient with probable Progressive Supranuclear Palsy. Movement Disorders Clinical Practice. 2018;5(1):99-100. PMID: 30271811, PMCID: PMC6159909
- Zetterberg H, van Swieten JC, Boxer AL, Rohrer JD. Fluid biomarkers for frontotemporal dementias. Neuropathol Appl Neurobiol. 2018. PMID: 30422329
- Duff K, McDermott D, Luong D, Randolph C, Boxer AL. Cognitive deficits in progressive supranuclear palsy on the Repeatable Battery for the Assessment of Neuropsychological Status. J Clin Exp Neuropsychol. 2019:1-7. PMID: 30712468
- Tsai RM, Bejanin A, Lesman-Segev O, et al. (18)F-flortaucipir (AV-1451) tau PET in frontotemporal dementia syndromes. Alzheimers Res Ther. 2019;11(1):13. PMID: 30704514
Angelman, Rett, and Prader-Willi Syndromes Consortium
Book Chapters
- Butler MG. Genetics and obesity: Prader-Willi syndrome, an illustrative example. In: Ling PR, ed. Focus on Obesity Research. Hauppauge, NY: Nova Science Publishers; 2005:51-88.
- Butler MG. Prader-Willi syndrome: an example of genomic imprinting. In: Butler MG, Meaney FJ, eds. Genetics of Developmental Disabilities. 1st ed. Boca Raton: Taylor & Francis; 2005:279318.
- McCune H, Driscoll DJ. Prader-Willi syndrome. In: Ekvall SW, Ekvall VK, eds. Pediatric Nutrition in Chronic Diseases and Developmental Disorders. Oxford: Oxford University Press; 2005:128132.
- Butler MG, Hanchett J, Thompson T. Clinical findings and natural history of Prader-Willi syndrome. In: Butler MG, Lee PDK, Whitman BY, eds. Management of Prader-Willi Syndrome. 3rd ed. New York, NY: Springer-Verlag Publishers; 2006:3-48.
- Hodapp RM, Dykens E. Behavioural phenotypes: growing understandings of psychiatric disorders in individuals with disabilities. In: Bouras N, Holt G, eds. Psychiatric and behavioural disorders in developmental disabilities. 2nd ed. Cambridge: Cambridge University Press; 2007:202-214.
- Hodapp RM, Dykens E. Behavioral effects of genetic mental retardation disorders. In: Jacobson JW, Mulick JA, Rojahn J, eds. Handbook of Intellectual and Developmental Disabilities. New York: Springer 2007.
- Levitas A, Dykens E, Finucane B, Kates. Behavioral phenotypes. In: Fletcher R, Loschen E, Stavrakaki C, First M, eds. Diagnostic Manual-Intellectual Disability: A textbook of diagnosis of mental disorders in persons with intellectual disability. Kingston, NY: NADD Press; 2007.
- Volkmar F, Dykens E, Hodapp RM. Mental retardation. In: Martin A, Volkmar F, eds. Lewis's Child and Adolescent Psychiatry. 4 ed. Philadelphia: Lippincott Williams & Wilkins; 2007:401409.
- Bittel DC, Butler MG. Clinical genetics, gene expression and imprinting in Prader-Willi syndrome: invited review. In: Squire L, ed. New Encyclopedia of Neuroscience. Hauppauge, NY: Nova Science Publishers; 2008:51-88.
- Bird LM. Angelman syndrome. In: Squire L, ed. Encyclopedia of Neuroscience. Vol 1. Oxford: Academic Press; 2009:375-380.
Abstracts Presented at Conferences
- Beaudet A. Status of therapeutic trials in Angelman syndrome. Paper presented at: Canadian Angelman Syndrome Society, 7th International Conference; July 23, 2004; Edmonton, Alberta, Canada.
- Bacino C, Peters S, Beaudet A, Madduri N, Bird L, Barbieri-Welge R, Bichell T, Sahoo T. Comparative genome microarray testing in deletion positive Angelman syndrome subjects and genotype-phenotype correlations. Class I deletions predict a more severe phenotype. Paper presented at: The American College of Medical Genetics Meeting; March 17-20, 2005; Grapevine, TX.
- Beaudet A, Bacino C, Bird L, Kimonis V, Peters S, Bichell T, Barbieri-WeIge R, Shinawi L. Results of a trial of folic acid and betaine in Angelman syndrome and future directions. Paper presented at: Biennial Angelman Syndrome Foundation Conference; June 28, 2005; Anaheim, CA.
- Bird L, Bichell T, Bacino C, Beaudet A, Shinawi L, Kimonis V. Gastrointestinal manifestations of Angelman syndrome. Paper presented at: Biennial Angelman Syndrome Foundation Conference; June 28, 2005; Anaheim, CA.
- Peters S, Beaudet A, Madduri N, Sahoo T, Bird L, Barbieri-Welge R, Bichell T, Bacino C. Autism in Angelman syndrome. Paper presented at: The biennial Angelman Syndrome Foundation Conference; June 28, 2005; Anaheim, CA.
- Peters S, Sahoo T, Beaudet A, German J, Bird L, Barbieri-Welge R, Bichell T, Bacino C. Redefining the clinical phenotype in Angelman syndrome using microarray-based comparative genomic hybridization testing in children with known deletions. Paper presented at: American Society of Human Genetics Meeting; October 25-29, 2005; Salt Lake City, UT.
- Dykens EM. New findings on behavioral strengths and problems in persons with Prader-Willi syndrome. Paper presented at: The 28th Annual Prader-Willi Syndrome Scientific and Parent Conference; July, 2006; Grand Island, NY.
- Driscoll D. Neurocognitive studies of Prader-Willi syndrome and early-onset morbid obesity. Paper presented at: Medical Genetics Grand Rounds; July 7, 2006; Cambridge University, Cambridge, England.
- Peters S, Sahoo T, German J, Shaw C, Bird L, Kimoni sV, Beaudet A, Bacino C. Identification of novel deletions of 15q11q13 in Angelman syndrome by array-based comparative genomic hybridization (CGH): Large segmental duplicons flank the breakpoints. Poster presentation Paper presented at: The American Society of Human Genetics meeting; October 9-13, 2006; New Orleans, LA.
- Driscoll D. The nutritional phases of Prader-Willi syndrome. Paper presented at: First International Prader-Willi Syndrome Consensus Conference; October 26-28, 2006; Toulouse, France.
- Dykens EM. Behavioural problems in Prader-Willi and Williams syndromes. Paper presented at: International Jerome Lejeune Clinical Conference; November, 2006; Institut Pasteur, Paris, France.
- Dykens EM, Roof E, Pantino E, Johnson R, Bialik M. Prader-Willi syndrome: Toward a more balanced phenotype. Paper presented at: 40th Annual Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities; March, 2007.
- Dykens EM. Strengths and weaknesses in people with Prader-Willi syndrome. Paper presented at: The 5th International Conference on Prader-Willi syndrome; June, 2007; Cluj, Romania.
- Schwenk KA, Miller JL, Kranzler JH, Driscoll DJ. Prader-Willi syndrome and others with earlyonset morbid obesity share similar strengths in cognition and achievement. Paper presented at: International Prader-Willi Syndrome Organization 2007 Conference; June, 2007; Cluj, Romania.
- Bird L. Results of the Folate-Betaine trial for the treatment of Angelman syndrome, and progress in the Betaine-B12-Creatine-Metafolin trial. Paper presented at: Biennial Angelman Syndrome Foundation conference; July 25, 2007; St. Louis, MO.
- Tan W, Bacino C, Skinner S, Beaudet A, Bichell T, LM B. A summary of the Rare Disease Network’s Angelman syndrome natural history study. Paper presented at: Angelman Syndrome Foundation 2007 Scientific Symposium; July 25, 2007; St Louis, MO.
- Bichell T, Kimonis V, Bacino C, Beaudet A, Bird L, Nespeca M. Efficacy of anti-epileptic medications for Angelman syndrome. Paper presented at: Angelman Syndrome Foundation’s 10th Biennial Conference and Scientific Symposium; July 26, 2007; St. Louis, MO.
- Bichell TJ, Valle C, Johnson M, Huffsmith B, Rossi L, Ulman T, Gutierrez C, Key S, Lee E, Dykens E. Alphabet therapy: a novel way to teach children with Angelman syndrome and measure their academic abilities. Paper presented at: Angelman Syndrome Foundation’s 10th Biennial Conference and Scientific Symposium; July 26, 2007; St. Louis, MO.
- Tan W, Lawrence J, Bacino C, Skinner S, Beaudet A, Bichell T, LM B. A natural history study of Angelman syndrome. Paper presented at: Rare Diseases Clinical Research Network 2007 Conference on Clinical Research for Rare Diseases; Sept 9, 2007; Bethesda, MD.
- Driscoll D. Health issues and medical interventions in childhood for Prader-Willi syndrome. Paper presented at: Prader-Willi California Foundation Annual Meeting; October 25, 2007; Los Angeles, CA.
- Butler MG. Genetics of Prader-Willi syndrome. Paper presented at: 1st Asia-Pacific Prader-Willi Syndrome Conference; March 1, 2008; Wellington, New Zealand.
- Butler MG. Prader-Willi syndrome: evidence of autism. Paper presented at: 1st Asia-Pacific Prader-Willi Syndrome Conference; March 2, 2008; Wellington, New Zealand.
- Rossi L, Valle C, Lumauag F, Johnson M, Huffsmith B, Ulman T, Gutierrez C, Key S, Lee E, Dykens E, Bichell TJ. Alphabet therapy: a novel way to teach children with Angelman syndrome and measure their academic abilities. Paper presented at: ABAI Annual Conference; May, 2008; Chicago, IL.
- Butler MG. Genetic subtype differences in Prader-Willi syndrome. Paper presented at: Italian Auxological Institute -50th Anniversary Conference; May 8, 2008; Milan, Italy.
- Peters SU, Bird LM, Barbier-Welge R, Tan WH, Hundley R, Skinner S, Bauer-Carlin A, Sahoo T, Bacino CA. The relationship between molecular subtype and autism symptom severity in Angelman syndrome. Paper presented at: The International Meeting for Autism Research; May 15, 2008; London, UK.
- Driscoll D. Overview of Prader-Willi syndrome. Paper presented at: Prader-Willi Syndrome Association (USA) National Meeting; July, 2008; Milwaukee, WI.
- Dykens EM. Effects of growth hormone treatment on young children with Prader-Willi syndrome. Paper presented at: 30th Annual Scientific Conference of the Prader-Willi Syndrome; July, 2008; Milwaukee, WI.
- Miller JL, Driscoll DJ. Changes in head circumference with growth hormone therapy in individuals with PWS. Paper presented at: Prader-Willi Syndrome Association Meeting; July, 2008; Milwaukee, WI.
- Schwenk KA, Miller JL, Kranzler JH, Lynn CH, Driscoll DJ. Factors effecting cognitive and achievement abilities in Prader-Willi syndrome. Paper presented at: Prader-Willi Syndrome Association Meeting; July, 2008; Milwaukee, WI.
- Kim S-J, Miller JL, Kuipers PJ, German JR, Beaudet AL, Sahoo T, Driscoll DJ. Unique deletions in Prader-Willi syndrome. Paper presented at: Prader-Willi Syndrome Association 2008 Meeting; July 2008; Milwaukee, WI.
- Cassidy SB, McCandless SE, Driscoll DJ, Schwartz S. Do some people with severe Prader-Willi syndrome have two microdeletion syndromes? Paper presented at: David Smith Meeting; August, 2008; Greenwood, SC.
- Bird L, Bacino C, Skinner S, Tan W-H, Peters S, Kimonis V, Barbieri-Welge R, Bichell T, Waisbren S, Gentile J, Tunick R, Anselm I, Beaudet A. Treatment of Angelman syndrome: results of the Folate-Betaine trial and interim analysis of the metafolin-betaine-vitamin B12-creatine trial. Paper presented at: David W. Smith Workshop on Malformations and Morphogenesis; August 9, 2008.
- Dykens EM, Finucane B. Behavioral and psychiatric phenotypes in genetic syndromes: Implications for treatment. Paper presented at: 25th Annual NADD Conference; November, 2008; Ontario, Canada.
- Peters SU, Bacino CA, Chu Z, Yallampalli R, Torres L, Hunter JV, Wilde EA. Inside the brain in Angelman syndrome: phenotypic characterization using advanced neuroimaging techniques. Paper presented at: The annual meeting of The American Society of Human Genetics; November, 2008; Philadelphia, PA.
- Butler MG, Kibiryeva N, Fischer W, Bittel DC. High resolution array comparative genomic hybridization (aCHG) in individuals with Prader-Willi syndrome. Paper presented at: KUMC Faculty Research Day and Poster Session; November 6, 2008; Kansas City, KS.
- Driscoll D. Prader-Willi syndrome, genetics of obesity section. Paper presented at: American College of Medical Genetics Meeting; March 25-29, 2009; Tampa, FL.
- Gentile J, Tan W, Bacino C, Skinner S, Barbieri-Welge R, Bauer-Carlin A, Beaudet A, Bichell T, Horowitz L, Lee H, Sahoo T, Waisbren S, Bird L, Peters S. A neurodevelopmental survey of Angelman syndrome with genotype-phenotype correlations. Paper presented at: American College of Medical GeneticsAnnual Clinical Meeting; March 27, 2009; Tampa, Florida.
- Peters SU, Bacino CA, Chu Z, Merkley T, Traipe E, Hunter JV, Wilde EA. Phenotypic characterization in Angelman syndrome using advanced neuroimaging techniques. Paper presented at: The annual meeting of The American College of Medical Genetics; March 27, 2009; Tampa, Florida.
- Tan W, Bacino C, Skinner S, Anselm I, Barbieri-Welge R, Bauer-Carlin A, Beaudet A, Bichell T, Gentile J, Glaze D, Horowitz L, Lee H, Nespeca M, Peters S, Sahoo T, Sarco D, Waisbren S, Bird L. Clinical features in 102 patients with Angelman syndrome. Paper presented at: American College of Medical Genetics 2009 Annual Clinical Meeting; March 27, 2009; Tampa, Florida.
- Bacino C, Peters S, Beaudet A, Bird L, Barbieri-Welge R, Bichell T, Sahoo T. Deletion classes in Angelman syndrome: genotype-phenotype correlations. Paper presented at: Biennial Angelman Syndrome Foundation conference; June 28, 2010; Anaheim, CA.
Journal Articles
- Weeber EJ, Jiang YH, Elgersma Y, Varga AW, Carrasquillo Y, Brown SE, Christian JM, Mirnikjoo B, Silva A, Beaudet AL, Sweatt JD. Derangements of hippocampal calcium/calmodulindependent protein kinase II in a mouse model for Angelman mental retardation syndrome. J Neurosci. Apr 1 2003;23(7):2634-2644. PMID: 12684449
- Shapira NA, Lessig MC, Lewis MH, Goodman WK, Driscoll DJ. Effects of topiramate in adults with Prader-Willi syndrome. Am J Ment Retard. Jul 2004;109(4):301-309. PMID: 15176917
- Peters SU, Goddard-Finegold J, Beaudet AL, Madduri N, Turcich M, Bacino CA. Cognitive and adaptive behavior profiles of children with Angelman syndrome. Am J Med Genet A. Jul 15 2004;128A(2):110-113. PMID: 15213998
- Jiang YH, Beaudet AL. Human disorders of ubiquitination and proteasomal degradation. Curr Opin Pediatr. Aug 2004;16(4):419-426. PMID: 15273504
- Peters SU, Beaudet AL, Madduri N, Bacino CA. Autism in Angelman syndrome: implications for autism research. Clin Genet. Dec 2004;66(6):530-536. PMID: 15521981
- Rodriguez-Jato S, Nicholls RD, Driscoll DJ, Yang TP. Characterization of cis- and trans-acting elements in the imprinted human SNURF-SNRPN locus. Nucleic Acids Res. 2005;33(15):47404753. PMID: 16116039, PMCID: PMC1188517
- Bittel DC, Kibiryeva N, Talebizadeh Z, Driscoll DJ, Butler MG. Microarray analysis of gene/transcript expression in Angelman syndrome: deletion versus UPD. Genomics. Jan 2005;85(1):85-91. PMID: 15607424
- Shapira NA, Lessig MC, He AG, James GA, Driscoll DJ, Liu Y. Satiety dysfunction in Prader-Willi syndrome demonstrated by fMRI. J Neurol Neurosurg Psychiatry. Feb 2005;76(2):260-262. PMID: 15654046, PMCID: PMC1739487
- Talebizadeh Z, Kibiryeva N, Bittel DC, Butler MG. Ghrelin, peptide YY and their receptors: gene expression in brain from subjects with and without Prader-Willi syndrome. Int J Mol Med. Apr 2005;15(4):707-711. PMID: 15754036
- Talebizadeh Z, Butler MG. Insulin resistance and obesity-related factors in Prader-Willi syndrome: comparison with obese subjects. Clin Genet. Mar 2005;67(3):230-239. PMID: 15691361
- Hartley SL, Maclean WE Jr, Butler MG, Zarcone J, Thompson T. Maladaptive behaviors and risk factors among the genetic subtypes of Prader-Willi syndrome. Am J Med Genet A. Jul 15 2005;136(2):140-145. PMID: 15940679, PMCID: PMC1896317
- Bittel DC, Butler MG. Prader-Willi syndrome: clinical genetics, cytogenetics and molecular biology. Expert Rev Mol Med. Jul 25 2005;7(14):1-20. PMID: 16038620
- Sahoo T, Shaw CA, Young AS, Whitehouse NL, Schroer RJ, Stevenson RE, Beaudet AL. Array based comparative genomic hybridization analysis of recurrent chromosome 15q rearrangements. Am J Med Genet A. Dec 1 2005;139A(2):106-113. PMID: 16284940
- Sellinger MH, Hodapp RM, Dykens E. Leisure activities in individuals with Prader-Willi, Williams, and Down syndromes. Journal of Developmental and Physical Disabilities. 2006;18(1):59-71.
- Young J, Zarcone J, Holsen L, Anderson MC, Hall S, Richman D, Butler MG, Thompson T. A measure of food seeking in individuals with Prader-Willi syndrome. J Intellect Disabil Res. Jan 2006;50(Pt 1):18-24. PMID: 16316427, PMCID: PMC1535345
- Kennedy L, Bittel DC, Kibiryeva N, Kalra SP, Torto R, Butler MG. Circulating adiponectin levels, body composition and obesity-related variables in Prader-Willi syndrome: comparison with obese subjects. Int J Obes. Feb 2006;30(2):382-387. PMID: 16231029
- Miller J, Silverstein J, Shuster J, Driscoll DJ, Wagner M. Short-term effects of growth hormone on sleep abnormalities in Prader-Willi syndrome. J Clin Endocrinol Metab. Feb 2006;91(2):413-417. PMID: 16317059
- Williams CA, Beaudet AL, Clayton-Smith J, Knoll JH, Kyllerman M, Laan LA, Magenis RE, Moncla A, Schinzel AA, Summers JA, Wagstaff J. Angelman syndrome 2005: updated consensus for diagnostic criteria. Am J Med Genet A. Mar 1 2006;140(5):413-418. PMID: 16470747
- Sahoo T, Peters SU, Madduri NS, Glaze DG, German JR, Bird LM, Barbieri-Welge R, Bichell TJ, Beaudet AL, Bacino CA. Microarray based comparative genomic hybridization testing in deletion bearing patients with Angelman syndrome: genotype-phenotype correlations. J Med Genet. Jun 2006;43(6):512-516. PMID: 16183798, PMCID: PMC2564536
- Miller J, Kranzler J, Liu Y, Schmalfuss I, Theriaque DW, Shuster JJ, Hatfield A, Mueller OT, Goldstone AP, Sahoo T, Beaudet AL, Driscoll DJ. Neurocognitive findings in Prader-Willi syndrome and early-onset morbid obesity. J Pediatr. Aug 2006;149(2):192-198. PMID: 16887432
- Bittel DC, Kibiryeva N, Butler MG. Expression of 4 genes between chromosome 15 breakpoints 1 and 2 and behavioral outcomes in Prader-Willi syndrome. Pediatrics. Oct 2006;118(4):e12761283. PMID: 16982806
- Theodoro MF, Talebizadeh Z, Butler MG. Body composition and fatness patterns in Prader-Willi syndrome: comparison with simple obesity. Obesity (Silver Spring). Oct 2006;14(10):1685-1690. PMID: 17062796
- Wu MY, Tsai TF, Beaudet AL. Deficiency of Rbbp1/Arid4a and Rbbp1l1/Arid4b alters epigenetic modifications and suppresses an imprinting defect in the PWS/AS domain. Genes Dev. Oct 15 2006;20(20):2859-2870. PMID: 17043311, PMCID: PMC1619944
- Butler MG. Management of obesity in Prader-Willi syndrome. Nat Clin Pract Endocrinol Metab. Nov 2006;2(11):592-593. PMID: 17082801
- Lawson-Yuen A, Wu BL, Lip V, Sahoo T, Kimonis V. Atypical cases of Angelman syndrome. Am J Med Genet A. Nov 1 2006;140(21):2361-2364. PMID: 17036311
- van Woerden GM, Harris KD, Hojjati MR, Gustin RM, Qiu S, de Avila Freire R, Jiang YH, Elgersma Y, Weeber EJ. Rescue of neurological deficits in a mouse model for Angelman syndrome by reduction of alphaCaMKII inhibitory phosphorylation. Nat Neurosci. Mar 2007;10(3):280-282. PMID: 17259980
- Bittel DC, Kibiryeva N, Sell SM, Strong TV, Butler MG. Whole genome microarray analysis of gene expression in Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):430-442. PMID: 17236194
- Bittel DC, Kibiryeva N, McNulty SG, Driscoll DJ, Butler MG, White RA. Whole genome microarray analysis of gene expression in an imprinting center deletion mouse model of Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):422-429. PMID: 17036336
- Butler MG, Bittel DC. Plasma obestatin and ghrelin levels in subjects with Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):415-421. PMID: 17304548
- Butler MG, Theodoro M, Skouse JD. Thyroid function studies in Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):488-492. PMID: 17304546
- Butler MG, Theodoro MF, Bittel DC, Donnelly JE. Energy expenditure and physical activity in Prader-Willi syndrome: comparison with obese subjects. Am J Med Genet A. Mar 1 2007;143(5):449-459. PMID: 17103434
- Butler MG, Theodoro MF, Bittel DC, Kuipers PJ, Driscoll DJ, Talebizadeh Z. X-chromosome inactivation patterns in females with Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):469-475. PMID: 17036338
- Miller JL, Couch JA, Schmalfuss I, He G, Liu Y, Driscoll DJ. Intracranial abnormalities detected by three-dimensional magnetic resonance imaging in Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):476-483. PMID: 17103438
- Stevenson DA, Heinemann J, Angulo M, Butler MG, Loker J, Rupe N, Kendell P, Clericuzio CL, Scheimann AO. Deaths due to choking in Prader-Willi syndrome. Am J Med Genet A. Mar 1 2007;143(5):484-487. PMID: 17036318, PMCID: PMC3243066
- Khalil AM, Driscoll DJ. Trimethylation of histone H3 lysine 4 is an epigenetic mark at regions escaping mammalian X inactivation. Epigenetics. Apr-Jun 2007;2(2):114-118. PMID: 17965609
- Miller JL, James GA, Goldstone AP, Couch JA, He G, Driscoll DJ, Liu Y. Enhanced activation of reward mediating prefrontal regions in response to food stimuli in Prader-Willi syndrome. J Neurol Neurosurg Psychiatry. Jun 2007;78(6):615-619. PMID: 17158560, PMCID: PMC2077944
- Zarcone J, Napolitano D, Peterson C, Breidbord J, Ferraioli S, Caruso-Anderson M, Holsen L, Butler MG, Thompson T. The relationship between compulsive behaviour and academic achievement across the three genetic subtypes of Prader-Willi syndrome. J Intellect Disabil Res. Jun 2007;51(Pt. 6):478-487. PMID: 17493030
- Dykens EM, Maxwell MA, Pantino E, Kossler R, Roof E. Assessment of hyperphagia in Prader Willi syndrome. Obesity (Silver Spring). Jul 2007;15(7):1816-1826. PMID: 17636101
- Miller JL, Couch JA, Leonard CM, Schwenk K, Towler SD, Shuster J, Goldstone AP, He G, Driscoll DJ, Liu Y. Sylvian fissure morphology in Prader-Willi syndrome and early-onset morbid obesity. Genet Med. Aug 2007;9(8):536-543. PMID: 17700392
- Stevenson DA, Heinemann J, Angulo M, Butler MG, Loker J, Rupe N, Kendell P, Cassidy SB, Scheimann A. Gastric rupture and necrosis in Prader-Willi syndrome. J Pediatr Gastroenterol Nutr. Aug 2007;45(2):272-274. PMID: 17667731, PMCID: PMC3241991
- Sahoo T, Bacino CA, German JR, Shaw CA, Bird LM, Kimonis V, Anselm I, Waisbren S, Beaudet AL, Peters SU. Identification of novel deletions of 15q11q13 in Angelman syndrome by array-CGH: molecular characterization and genotype-phenotype correlations. Eur J Hum Genet. Sep 2007;15(9):943-949. PMID: 17522620
- Bittel DC, Kibiryeva N, Butler MG. Methylation-specific multiplex ligation-dependent probe amplification analysis of subjects with chromosome 15 abnormalities. Genet Test. Winter 2007;11(4):467-475. PMID: 18294067
- Jiang YH, Wauki K, Liu Q, Bressler J, Pan Y, Kashork CD, Shaffer LG, Beaudet AL. Genomic analysis of the chromosome 15q11-q13 Prader-Willi syndrome region and characterization of transcripts for GOLGA8E and WHCD1L1 from the proximal breakpoint region. BMC Genomics. 2008;9:50. PMID: 18226259, PMCID: PMC2268926
- Scheimann AO, Butler MG, Gourash L, Cuffari C, Klish W. Critical analysis of bariatric procedures in Prader-Willi syndrome. J Pediatr Gastroenterol Nutr. Jan 2008;46(1):80-83. PMID: 18162838
- Dindot SV, Antalffy BA, Bhattacharjee MB, Beaudet AL. The Angelman syndrome ubiquitin ligase localizes to the synapse and nucleus, and maternal deficiency results in abnormal dendritic spine morphology. Hum Mol Genet. Jan 1 2008;17(1):111-118. PMID: 17940072
- Brandau DT, Theodoro M, Garg U, Butler MG. Follicle stimulating and leutinizing hormones, estradiol and testosterone in Prader-Willi syndrome. Am J Med Genet A. Mar 1 2008;146A(5):665-669. PMID: 18241068
- Butler MG, Fischer W, Kibiryeva N, Bittel DC. Array comparative genomic hybridization (aCGH) analysis in Prader-Willi syndrome. Am J Med Genet A. Apr 1 2008;146(7):854-860. PMID: 18266248
- Key AP, Dykens EM. 'Hungry Eyes': visual processing of food images in adults with Prader-Willi syndrome. J Intellect Disabil Res. Jun 2008;52(Pt 6):536-546. PMID: 18422527
- Sahoo T, del Gaudio D, German JR, Shinawi M, Peters SU, Person RE, Garnica A, Cheung SW, Beaudet AL. Prader-Willi phenotype caused by paternal deficiency for the HBII-85 C/D box small nucleolar RNA cluster. Nat Genet. Jun 2008;40(6):719-721. PMID: 18500341, PMCID: PMC2705197
- Haas KF, Broadie K. Roles of ubiquitination at the synapse. Biochim Biophys. Acta. Aug 2008;1779(8):495-506. PMID: 18222124, PMCID: PMC2668815
- Dykens EM, Roof E. Behavior in Prader-Willi syndrome: relationship to genetic subtypes and age. J Child Psychol Psychiatry. Sep 2008;49(9):1001-1008. PMID: 18665884
- Goldstone AP, Holland AJ, Hauffa BP, Hokken-Koelega AC, Tauber M. Recommendations for the diagnosis and management of Prader-Willi syndrome. J Clin Endocrinol Metab. Nov 2008;93(11):4183-4197. PMID: 18697869
- Cassidy SB, Driscoll DJ. Prader-Willi syndrome. Eur J Hum Genet. Jan 2009;17(1):3-13. PMID: 18781185, PMCID: PMC2985966
- Holsen LM, Zarcone JR, Chambers R, Butler MG, Bittel DC, Brooks WM, Thompson TI, Savage CR. Genetic subtype differences in neural circuitry of food motivation in Prader-Willi syndrome. Int J Obes. Feb 2009;33(2):273-283. PMID: 19048015, PMCID: PMC2643328
- Butler MG, Brandau DT, Theodoro M, Garg U. Cortisol levels in Prader-Willi syndrome support changes in routine care. Am J Med Genet A. Feb 2009;149A(2):138-139. PMID: 19133690
- Scheimann A, Butler MG, Stevenson D, Miller JL, Cuffari C, Klish WJ. "Efficacy of laparoscopic sleeve gastrectomy as a stand-alone technique for children with morbid obesity" and "BioEnterics intragastric balloon for treatment of morbid obesity in Prader-Willi syndrome: specific risks and benefits". Obes Surg. May 2009;19(5):671-672; author reply 673. PMID: 18982398
- Ben-Shachar S, Lanpher B, German JR, Qasaymeh M, Potocki L, Nagamani SC, Franco LM, Malphrus A, Bottenfield GW, Spence JE, Amato S, Rousseau JA, Moghaddam B, Skinner C, Skinner SA, Bernes S, Armstrong N, Shinawi M, Stankiewicz P, Patel A, Cheung SW, Lupski JR, Beaudet AL, Sahoo T. Microdeletion 15q13.3: a locus with incomplete penetrance for autism, mental retardation, and psychiatric disorders. J Med Genet. Jun 2009;46(6):382-388. PMID: 19289393, PMCID: PMC2776649
- Butler MG, Brandau DT, Theodoro MF, Garg U. Morning melatonin levels in Prader-Willi syndrome. Am J Med Genet A. Aug 2009;149A(8):1809-1813. PMID: 19606476
- Geer JS, Skinner SA, Goldin E, Holden KR. Mucolipidosis type IV: a subtle pediatric neurodegenerative disorder. Pediatr Neurol. Mar 2010;42(3):223-226. PMID: 20159435, PMCID: PMC2824620
- Gentile JK, Tan WH, Horowitz LT, Bacino CA, Skinner SA, Barbieri-Welge R, Bauer-Carlin A, Beaudet AL, Bichell TJ, Lee HS, Sahoo T, Waisbren SE, Bird LM, Peters SU. A neurodevelopmental survey of Angelman syndrome with genotype-phenotype correlations. J Dev Behav Pediatr. Sep 2010;31(7):592-601. PMID: 20729760, PMCID: PMC2997715
- Tan WH, Bacino CA, Skinner SA, Anselm I, Barbieri-Welge R, Bauer-Carlin A, Beaudet AL, Bichell TJ, Gentile JK, Glaze DG, Horowitz LT, Kothare SV, Lee HS, Nespeca MP, Peters SU, Sahoo T, Sarco D, Waisbren SE, Bird LM. Angelman syndrome: Mutations influence features in early childhood. Am J Med Genet A. Jan 2011;155A(1):81-90. PMID: 21204213, PMCID: PMC3563320
- Peters SU, Kaufmann WE, Bacino CA, Anderson AW, Adapa P, Chu Z, Yallampalli R, Traipe E, Hunter JV, Wilde EA. Alterations in white matter pathways in Angelman syndrome. Dev Med Child Neurol. Apr 2011;53(4):361-367. PMID: 21121904, PMCID: PMC3059217
- Butler MG, Sturich J, Lee J, Myers SE, Whitman BY, Gold JA, Kimonis V, Scheimann A, Terrazas N, Driscoll DJ. Growth standards of infants with Prader-Willi syndrome. Pediatrics. Apr 2011;127(4):687-695. PMID: 21402637, PMCID: PMC3065075
- Miller JL, Lynn CH, Driscoll DC, Goldstone AP, Gold JA, Kimonis V, Dykens E, Butler MG, Shuster JJ, Driscoll DJ. Nutritional phases in Prader-Willi syndrome. Am J Med Genet A. May 2011;155A(5):1040-1049. PMID: 21465655, PMCID: PMC3285445
- Dykens EM, Roof E, Bittel D, Butler MG. TPH2 G/T polymorphism is associated with hyperphagia, IQ, and internalizing problems in Prader-Willi syndrome. J Child Psychol Psychiatry. May 2011;52(5):580-587. PMID: 21418060, PMCID: PMC3353323
- Bird LM, Tan WH, Bacino CA, Peters SU, Skinner SA, Anselm I, Barbieri-Welge R, Bauer-Carlin A, Gentile JK, Glaze DG, Horowitz LT, Mohan KN, Nespeca MP, Sahoo T, Sarco D, Waisbren SE, Beaudet AL. A therapeutic trial of pro-methylation dietary supplements in Angelman syndrome. Am J Med Genet A. Dec 2011;155A(12):2956-2963. PMID: 22002941, PMCID: PMC3222728
- Beaudet AL. Angelman syndrome: Drugs to awaken a paternal gene. Nature. Jan 12 2012;481(7380):150-152. PMID: 22190038, PMCID: PMC3638729
- Peters SU, Horowitz L, Barbieri-Welge R, Taylor JL, Hundley RJ. Longitudinal follow-up of autism spectrum features and sensory behaviors in Angelman syndrome by deletion class. J Child Psychol Psychiatry. Feb 2012;53(2):152-159. PMID: 21831244
- Kim SJ, Miller JL, Kuipers PJ, German JR, Beaudet AL, Sahoo T, Driscoll DJ. Unique and atypical deletions in Prader-Willi syndrome reveal distinct phenotypes. Eur J Hum Genet. Mar 2012;20(3):283-290. PMID: 22045295, PMCID: PMC3283188
- Henkhaus RS, Kim SJ, Kimonis VE, Gold JA, Dykens EM, Driscoll DJ, Butler MG. Methylationspecific multiplex ligation-dependent probe amplification and identification of deletion genetic subtypes in Prader-Willi syndrome. Genetic testing and molecular biomarkers. Mar 2012;16(3):178-186. PMID: 21977908, PMCID: PMC3306590
- Vendrame M, Loddenkemper T, Zarowski M, Gregas M, Shuhaiber H, Sarco DP, Morales A, Nespeca M, Sharpe C, Haas K, Barnes G, Glaze D, Kothare SV. Analysis of EEG patterns and genotypes in patients with Angelman syndrome. Epilepsy Behav. Mar 2012;23(3):261-265. PMID: 22341959
- Meng L, Person RE, Beaudet AL. Ube3a-ATS is an atypical RNA polymerase II transcript that represses the paternal expression of Ube3a. Hum Mol Genet. Jul 1, 2012;21(13):3001-3012. PMID: 22493002, PMCID: PMC3465693
- Rethmeyer JA, Tan X, Manzardo A, Schroeder SR, Butler MG. Comparison of biological specimens and DNA collection methods for PCR amplification and microarray analysis. Clin Chem Lab Med. May 2013;51(5):e79-83. PMID: 23241593, PMCID: PMC3660108
- Butler MG, Roberts J, Hayes J, Tan X, Manzardo AM. Growth hormone receptor (GHR) gene polymorphism and Prader-Willi syndrome. Am J Med Genet A. Jul 2013;161A(7):1647-1653. PMID: 23696513, PMCID: PMC3689873
- Yazdi PG, Su H, Ghimbovschi S, et al. Differential gene expression reveals mitochondrial dysfunction in an imprinting center deletion mouse model of prader-willi syndrome. Clin Transl Sci. Oct 2013;6(5):347-355. PMID: 24127921, PMCID: PMC3815468
- Dykens EM. Leisure activities in Prader-Wili syndrome: implications for health, cognition and adaptive functioning. J Autism Dev Disord. Feb 2014;44(2):294-302. PMID: 22484792, PMCID: PMC3473107
- Heymsfield SB, Avena NM, Baier L, et al. Hyperphagia: current concepts and future directions proceedings of the 2nd international conference on hyperphagia. Obesity (Silver Spring, Md). Feb 2014;22 Suppl 1:S1-S17. PMID: 24574081, PMCID: PMC4159941
- Khare M, Gold JA, Wencel M, et al. Effect of genetic subtypes and growth hormone treatment on bone mineral density in Prader-Willi syndrome. J Pediatr Endocrinol Metab. May 2014;27(5-6):511-518. PMID: 24515997
- Butler MG, Wang K, Marshall JD, et al. Coding and noncoding expression patterns associated with rare obesity-related disorders: Prader-Willi and Alstrom syndromes. Advances in Genomics and Genetics. 2015;2015(5):53-75. PMID: 25705109, PMCID: PMC4334166
- Butler MG, Lee J, Manzardo AM, et al. Growth charts for non-growth hormone treated Prader-Willi syndrome. Pediatrics. Jan 2015;135(1):e126-135. PMID: 25489013, PMCID: PMC4279067
- Kweh FA, Miller JL, Sulsona CR, et al. Hyperghrelinemia in Prader-Willi syndrome begins in early infancy long before the onset of hyperphagia. Am J Med Genet A. Jan 2015;167A(1):69-79. PMID: 25355237, PMCID: PMC4391201
- Miodrag N, Peters S. Parent stress across molecular subtypes of children with Angelman syndrome. J Intellect Disabil Res. Sep 2015;59(9):816-826. PMID: 25833412
- Miller JL, Tamura R, Butler MG, et al. Oxytocin treatment in children with Prader-Willi syndrome: A double-blind, placebo-controlled, crossover study. Am J Med Genet A. 2017;173(5):1243-1250. PMID: 28371242
Special Projects
- Williams CA, Dagli A. Angelman Syndrome. 2008; http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=angelman.
- Butler MG, Welch J, Riske M, Vogel R, Troxell R, Rope A. Prader-Willi Syndrome. Medical Home Portal 2009.
Autonomic Rare Diseases Clinical Research Consortium
Book Chapters
- Biaggioni I. Postural hypotension. In: Lebovitz H, ed. Therapy of Diabetes Mellitus and Related Disorders. 5 ed. Alexandria, VA: American Diabetes Association, Inc.; 2009.
- Biaggioni I, Kaufmann H. Postural Hypotension. In: Chaudhuri R, Tolosa E, Shapira A, Poewe W, eds. Non-Motor Symptoms of Parkinson’s Disease. New York, NY: Oxford University Press; 2009.
- Biaggioni I, Robertson D. Adrenoceptor agonists and sympathomimetics drugs. In: Katzung B, ed. Basic and Clinical Pharmacology. 11 ed. New York, NY: Lang Basic Science; 2009.
- Robertson D, Biaggioni I. Adrenoceptor antagonist drugs. In: Katzung B, ed. Basic and Clinical Pharmacology. 11 ed. New York, NY: Lange Basic Science; 2009.
- Kaufmann H, Biaggioni I. Disorders of the autonomic nervous system. In: Filit H, Rockwood K, Woodhouse K, eds. Brocklehurst’s textbook of geriatric medicine and gerontology. Philadelphia, PA: Saunders Elsevier; 2010.
- Arnold AC, Diz D. Renin-Angiotensin. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Gamboa A. Nitric Oxide and Autonomic Regulation. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Garland EM. Dopamine Beta-Hydroxylase Deficiency. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Gibbons CH, Freeman R. Cutaneous Autonomic Innervation: Assessment by Skin Biopsy. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Gibbons CH, Freeman R. Delayed Orthostatic Hypotension. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Gilden JL. Midodrine, Adrenergic Agonists and Antagonists. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Goldstein DS. Noradrenergic Neurotransmission. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Goldstein DS. Clinical Sympathetic Imaging. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Hahn MK. Antidepressant-Sensitive Norepinephrine Transporters: Structure and Regulation. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Hahn MK. Norepinephrine Transporter Deficiency. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Joos KM, Melson MR. Control of the Pupil. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Kaufmann H. Droxidopa (L-DOPS). In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Kaufmann H, Norcliffe-Kaufmann L, Axelrod F. Familial Dysautonomia (Riley-Day Syndrome). In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Kaufmann H, Schatz I. Pure Autonomic Failure. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Low PA. Sweating. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Low PA, McLeod JG. Guillain-Barré Syndrome. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Low PA, Sandroni P. Postural Tachycardia Syndrome (POTS). In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Okamato LE, Raj SR, Biaggioni I. Chronic Fatigue Syndrome and the Autonomic Nervous System. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Peltier AC. Diagnostic Workup of Peripheral Neuropathies with Dysautonomia. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Peltier AC, Davis SN. Diagnostic Workup of Peripheral Neuropathies with Dysautonomia. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Raj SR. Neurally Mediated Syncope. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Raj SR. Tilt Table Studies. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Raj SR. Mechanisms of Postural Tachycardia. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Robertson D. Orthostatic Hypertension. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Robertson D, Gilman S. Multiple System Atrophy. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Robertson D, Robertson RM. Fludrocortisone. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Robertson D, Sato K. Stress Cardiomyopathy and Takotsubo Syndrome. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Sandroni P. Clinical Evaluation of Autonomic Disorders. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Sato T, Diedrich A, Sunagawa K. Bionic Baroreflex. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Shibao C. Obesity-Associated Hypertension. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Shibao C. Acarbose. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Shibao C, Okamato LE. Agents Potentiating Sympathetic Tone. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Stein CM. Beta-Adrenergic Receptors. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Vernino S, Low P. Autoimmune Autonomic Gangionopathy. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2011.
- Biaggioni I. Adenosine Receptors and Autonomic Regulation. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2012.
- Biaggioni I. Genetic Determinants of Baroreflex Function. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2012.
- Biaggioni I. Erythropoietin in Autonomic Failure. In: Robertson D, Biaggioni I, Burnstock G, Low PA, Paton JFR, eds. Primer on the Autonomic Nervous System. 3rd ed: Academic Press; 2012.
- Biaggioni I, Robertson D. Adrenoceptor agonists and sympathomimetics drugs. In: Katzung B, ed. Basic and Clinical Pharmacology. 12 ed. New York, NY: Lange Basic Science; 2012.
- Freeman R. Autonomic Peripheral Neuropathy. In: Donofrio P, ed. Textbook of Peripheral Neuropathy. New York: Demos Medical; 2012:421-438.
- Freeman R. Pharmacotherapy of Neuropathic Pain. In: Simpson D, McArthur J, Dworkin R, eds. Neuropathic Pain: Mechanisms and Management. New York, NY: Oxford University Press; 2012.
- Robertson D, Biaggioni I. Adrenoceptor antagonist drugs. In: Katzung B, ed. Basic and Clinical Pharmacology. 12 ed. New York, NY: Lange Basic Science; 2012.
- Robertson D, Biaggioni I, Burstock G, Low P, Paton J. Primer on the Autonomic Nervous System. 3 ed. Oxford: Elsevier Academic Press; 2012.
Journal Articles
- Goldstein DS, Eldadah BA, Holmes C, Pechnik S, Moak J, Saleem A, Sharabi Y. Neurocirculatory abnormalities in Parkinson disease with orthostatic hypotension: independence from levodopa treatment. Hypertension. Dec 2005;46(6):1333-1339. PMID: 16216982
- Goldstein DS. Orthostatic hypotension as an early finding in Parkinson's disease. Clin Auton Res. Feb 2006;16(1):46-54. PMID: 16477495
- Goldstein DS. Cardiac denervation in patients with Parkinson disease. Cleve Clin J Med. Feb 2007;74 Suppl 1:S91-94. PMID: 17455553
- Goldstein DS, Holmes C, Sato T, Bernson M, Mizrahi N, Imrich R, Carmona G, Sharabi Y, Vortmeyer AO. Central dopamine deficiency in pure autonomic failure. Clin Auton Res. Apr 2008;18(2):58-65. PMID: 18363034
- Goldstein DS, Holmes C, Bentho O, Sato T, Moak J, Sharabi Y, Imrich R, Conant S, Eldadah BA. Biomarkers to detect central dopamine deficiency and distinguish Parkinson disease from multiple system atrophy. Parkinsonism Relat Disord. Dec 2008;14(8):600-607. PMID: 18325818, PMCID: PMC2650101
- Goldstein DS, Sharabi Y. Neurogenic orthostatic hypotension: a pathophysiological approach. Circulation. Jan 6 2009;119(1):139-146. PMID: 19124673, PMCID: PMC4182314
- Okamoto LE, Gamboa A, Shibao C, Black BK, Diedrich A, Raj SR, Robertson D, Biaggioni I. Nocturnal blood pressure dipping in the hypertension of autonomic failure. Hypertension. Feb 2009;53(2):363-369. PMID: 19047577, PMCID: PMC2665259
- Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Biaggioni I, Robertson D, Shelton RC. Psychiatric profile and attention deficits in postural tachycardia syndrome. J Neurol Neurosurg Psychiatry. Mar 2009;80(3):339-344. PMID: 18977825, PMCID: PMC2758320
- Goldstein DS, Sewell L. Olfactory dysfunction in pure autonomic failure: Implications for the pathogenesis of Lewy body diseases. Parkinsonism Relat Disord. Aug 2009;15(7):516-520. PMID: 19201246, PMCID: PMC4164391
- Raj SR, Black BK, Biaggioni I, Paranjape SY, Ramirez M, Dupont WD, Robertson D. Propranolol decreases tachycardia and improves symptoms in the postural tachycardia syndrome: less is more. Circulation. Sep 1 2009;120(9):725-734. PMID: 9687359, PMCID: PMC2758650
- Garland EM, Gamboa A, Okamoto L, Raj SR, Black BK, Davis TL, Biaggioni I, Robertson D. Renal impairment of pure autonomic failure. Hypertension. Nov 2009;54(5):1057-1061. PMID: 19738158, PMCID: PMC2796115
- Tellez MJ, Norcliffe-Kaufmann LJ, Lenina S, Voustianiouk A, Kaufmann H. Usefulness of tiltinduced heart rate changes in the differential diagnosis of vasovagal syncope and chronic autonomic failure. Clin Auton Res. Dec 2009;19(6):375-380. PMID: 19834645
- Goldstein DS, Sewell L, Holmes C. Association of anosmia with autonomic failure in Parkinson disease. Neurology. Jan 19 2010;74(3):245-251. PMID: 20083801, PMCID: PMC2809034
- Kaufmann H, Goldstein DS. Pure autonomic failure: a restricted Lewy body synucleinopathy or early Parkinson disease? Neurology. Feb 16 2010;74(7):536-537. PMID: 20157156
- Peltier AC, Black BK, Raj SR, Donofrio P, Robertson D, Biaggioni I. Coexistent autoimmune autonomic ganglionopathy and myasthenia gravis associated with non-small-cell lung cancer. Muscle Nerve. Mar 2010;41(3):416-419. PMID: 19882640, PMCID: PMC3925506
- Mustafa HI, Robertson D. Beyond postural tachycardia syndrome. J Neurol Neurosurg Psychiatry. Mar 2010;81(3):237-238. PMID: 20185461, PMCID: PMC3848708
- Peltier AC, Garland E, Raj SR, Sato K, Black B, Song Y, Wang L, Biaggioni I, Diedrich A, Robertson D. Distal sudomotor findings in postural tachycardia syndrome. Clin Auton Res. Apr 2010;20(2):93-99. PMID: 20035362, PMCID: PMC3089763
- Figueroa JJ, Basford JR, Low PA. Preventing and treating orthostatic hypotension: As easy as A, B, C. Cleve Clin J Med. May 2010;77(5):298-306. PMID: 20439562, PMCID: PMC2888469
- Martinez JM, Garakani A, Kaufmann H, Aaronson CJ, Gorman JM. Heart rate and blood pressure changes during autonomic nervous system challenge in panic disorder patients. Psychosom Med. Jun 2010;72(5):442-449. PMID: 20368476
- McHugh J, Keller NR, Appalsamy M, Thomas SA, Raj SR, Diedrich A, Biaggioni I, Jordan J, Robertson D. Portal osmopressor mechanism linked to transient receptor potential vanilloid 4 and blood pressure control. Hypertension. Jun 2010;55(6):1438-1443. PMID: 20385965, PMCID: PMC2965336
- Kimpinski K, Iodice V, Low PA. Postural Tachycardia Syndrome associated with peripartum cardiomyopathy. Auton Neurosci. Jun 24 2010;155(1-2):130-131. PMID: 20167544, PMCID: PMC2878873
- Kimpinski K, Iodice V, Sandroni P, Low PA. Effect of pregnancy on postural tachycardia syndrome. Mayo Clin Proc. Jul 2010;85(7):639-644. PMID: 20516426, PMCID: PMC2894719
- Norcliffe-Kaufmann L, Gonzalez-Duarte A, Martinez J, Kaufmann H. Tachyarrythmias with elevated cardiac enzymes in Munchausen syndrome. Clin Auton Res. Aug 2010;20(4):259-261. PMID: 20424883
- Rekhtman Y, Bomback AS, Nash MA, et al. Renal transplantation in familial dysautonomia: report of two cases and review of the literature. Clin J Am Soc Nephrol. Sep 2010;5(9):16761680. PMID: 20558564, PMCID: PMC2974411
- Shibao C, Okamoto LE, Gamboa A, et al. Comparative efficacy of yohimbine against pyridostigmine for the treatment of orthostatic hypotension in autonomic failure. Hypertension. Nov 2010;56(5):847-851. PMID: 20837887, PMCID: PMC2959129
- Norcliffe-Kaufmann L, Axelrod F, Kaufmann H. Afferent baroreflex failure in familial dysautonomia. Neurology. Nov 23 2010;75(21):1904-1911. PMID: 21098405, PMCID: PMC2995385
- Graber JJ, Sherman FT, Kaufmann H, Kolodny EH, Sathe S. Vitamin B12-responsive severe leukoencephalopathy and autonomic dysfunction in a patient with "normal" serum B12 levels. J Neurol Neurosurg Psychiatry. Dec 2010;81(12):1369-1371. PMID: 20587489
- Shibao C, Biaggioni I. Orthostatic hypotension and cardiovascular risk. Hypertension. Dec 2010;56(6):1042-1044. PMID: 21059992, PMCID: PMC3752681
- Sletten DM, Kimpinski K, Weigand SD, Low PA. Comparison of a gel versus solution-based vehicle for the delivery of acetylcholine in QSART. Auton Neurosci. Dec 8 2010;158(1-2):123126. PMID: 20547476, PMCID: PMC2976794
- Norcliffe-Kaufmann LJ, Reynolds HR. Afferent baroreflex failure and tako-tsubo cardiomyopathy. Clin Auton Res. Feb 2011;21(1):1-2. PMID: 21240537
- Garland EM, Raj SR, Peltier AC, Robertson D, Biaggioni I. A cross-sectional study contrasting olfactory function in autonomic disorders. Neurology. Feb 1 2011;76(5):456-460. PMID: 21282592, PMCID: PMC3034411
- Hollenbeck R, Black BK, Peltier AC, Biaggioni I, Robertson D, Winton EF, Raj SR. Long-term treatment with rituximab of autoimmune autonomic ganglionopathy in a patient with lymphoma. Arch Neurol. Mar 2011;68(3):372-375. PMID: 21059985, PMC3725638
- Mustafa HI, Garland EM, Biaggioni I, Black BK, Dupont WD, Robertson D, Raj SR. Abnormalities of angiotensin regulation in postural tachycardia syndrome. Heart Rhythm. Mar 2011;8(3):422428. PMID: 21266211, PMCID: PMC3050076
- Kim CH, Leung A, Huh YH, Yang E, Kim DJ, Leblanc P, Ryu H, Kim K, Kim DW, Garland EM, Raj SR, Biaggioni I, Robertson D, Kim KS. Norepinephrine deficiency is caused by combined abnormal mRNA processing and defective protein trafficking of dopamine beta-hydroxylase. J Biol Chem. Mar 18 2011;286(11):9196-9204. PMID: 21209083, PMCID: PMC3059068
- Smith BA, Clayton EW, Robertson D. Experimental arrest of cerebral blood flow in human subjects: the red wing studies revisited. Perspect Biol Med. Spring 2011;54(2):121-131. PMID: 21532128, PMCID: PMC3848716
- Freeman R, Wieling W, Axelrod FB, et al. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Clin Auton Res. Apr 2011;21(2):69-72. PMID: 21431947
- Wang N, Gibbons CH, Freeman R. Novel immunohistochemical techniques using discrete signal amplification systems for human cutaneous peripheral nerve fiber imaging. J Histochem Cytochem. Apr 2011;59(4):382-390. PMID: 21411809, PMCID: PMC3201146
- Bagai K, Song Y, Ling JF, Malow B, Black BK, Biaggioni I, Robertson D, Raj SR. Sleep disturbances and diminished quality of life in postural tachycardia syndrome. J Clin Sleep Med. Apr 15 2011;7(2):204-210. PMID: 21509337, PMCID: PMC3077350
- Chow DC, Wood R, Choi J, Grandinetti A, Gerschenson M, Sriratanaviriyakul N, Nakamoto B, Shikuma C, Low P. Cardiovagal autonomic function in HIV-infected patients with unsuppressed HIV viremia. HIV Clin Trials. May-Jun 2011;12(3):141-150. PMID: 21684854, PMCID: 3175027
- Spallone V, Ziegler D, Freeman R, et al. Cardiovascular autonomic neuropathy in diabetes: clinical impact, assessment, diagnosis, and management. Diabetes Metab Res Rev. Jun 22 2011. PMID: 21695768
- Gonzalez-Duarte A, Norcliffe-Kaufmann L, Martinez J, et al. Cardiovascular and neuroendocrine features of Panayiotopoulos syndrome in three siblings. Epilepsy Behav. Jul 2011;21(3):296300. PMID: 21474385
- Jepma M, Deinum J, Asplund CL, Rombouts SA, Tamsma JT, Tjeerdema N, Spape MM, Garland EM, Robertson D, Lenders JW, Nieuwenhuis S. Neurocognitive function in dopamine-betahydroxylase deficiency. Neuropsychopharmacology. Jul 2011;36(8):1608-1619. PMID: 21471955, PMCID: PMC3138665
- Kempler P, Amarenco G, Freeman R, et al. Gastrointestinal autonomic neuropathy, erectile-, bladder- and sudomotor dysfunction in patients with diabetes mellitus: clinical impact, assessment, diagnosis, and management. Diabetes Metab Res Rev. Jul 11 2011. PMID: 21748841
- Halbig TD, Creighton J, Assuras S, Borod JC, Tse W, Gracies JM, Foldi NS, Kaufmann H, Olanow CW, Voustianiouk A. Preserved emotional modulation of motor response time despite psychomotor slowing in young-old adults. Int J Neurosci. Aug 2011;121(8):430-436. PMID: 21574890
- Wan DW, Levy J, Ginsburg HB, Kaufmann H, Axelrod FB. Complicated peptic ulcer disease in three patients with familial dysautonomia. J Clin Gastroenterol. Aug 2011;45(7):611-613. PMID: 20930641
- Pavy-Le Traon A, Amarenco G, Duerr S, et al. The Movement Disorders task force review of dysautonomia rating scales in Parkinson's disease with regard to symptoms of orthostatic hypotension. Mov Disord. Sep 2011;26(11):1985-1992. PMID: 21547951
- Miglis MG, Racela R, Kaufmann H. Seropositive myasthenia and autoimmune autonomic ganglionopathy: cross reactivity or subclinical disease? Auton Neurosci. Oct 28 2011;164(12):87-88. PMID: 21745762
- Macefield VG, Norcliffe-Kaufmann L, Gutierrez J, Axelrod FB, Kaufmann H. Can loss of muscle spindle afferents explain the ataxic gait in Riley-Day syndrome? Brain. Nov 2011;134(Pt 11):3198-3208. PMID: 22075519, PMCID: PMC3212710
- Axelrod FB, Liebes L, Gold-Von Simson G, Mendoza S, Mull J, Leyne M, Norcliffe-Kaufmann L, Kaufmann H, Slaugenhaupt SA. Kinetin improves IKBKAP mRNA splicing in patients with familial dysautonomia. Pediatr Res. Nov 2011;70(5):480-483. PMID: 21775922, PMCID: PMC3189334
- Ubhi K, Low P, Masliah E. Multiple system atrophy: a clinical and neuropathological perspective. Trends Neurosci. Nov 2011;34(11):581-590. PMID: 21962754, PMCID: PMC3200496
- Mustafa HI, Fessel JP, Barwise J, Shannon JR, Raj SR, Diedrich A, Biaggioni I, Robertson D. Dysautonomia: perioperative implications. Anesthesiology. Jan 2012;116(1):205-215. PMID: 22143168, PMCID: PMC3296831
- Brewster JA, Garland EM, Biaggioni I, Black BK, Ling JF, Shibao CA, Robertson D, Raj SR. Diurnal variability in orthostatic tachycardia: implications for the postural tachycardia syndrome. Clinical science (London, England : 1979). Jan 2012;122(1):25-31. PMID: 21751966, PMCID: PMC3172399
- Biaggioni I. Interventional approaches to reduce sympathetic activity in resistant hypertension: to ablate or stimulate? Hypertension. Feb 2012;59(2):194-195. PMID: 22184323
- Singer W, Sletten DM, Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA. Postural tachycardia in children and adolescents: what is abnormal? J Pediatr. Feb 2012;160(2):222-226. PMID: 21996154, PMCID: PMC3258321
- Okamoto LE, Raj SR, Peltier A, Gamboa A, Shibao C, Diedrich A, Black BK, Robertson D, Biaggioni I. Neurohumoral and haemodynamic profile in postural tachycardia and chronic fatigue syndromes. Clinical Science (London, England : 1979). Feb 2012;122(4):183-192. PMID: 21906029, PMCID: PMC3203411
- Mustafa HI, Raj SR, Diedrich A, Black BK, Paranjape SY, Dupont WD, Williams GH, Biaggioni I, Robertson D. Altered systemic hemodynamic and baroreflex response to angiotensin II in postural tachycardia syndrome. Circ Arrhythm Electrophysiol. Feb 1 2012;5(1):173-180. PMID: 22247480, PMCID: PMC3577936
- Wang Y, Shi M, Chung KA, et al. Phosphorylated alpha-synuclein in Parkinson's disease. Sci Transl Med. Feb 15 2012;4(121):121ra120. PMID: 22344688, PMCID: PMC3302662
- Mendoza-Santiesteban CE, Hedges TR, 3rd, Norcliffe-Kaufmann L, Warren F, Reddy S, Axelrod FB, Kaufmann H. Clinical neuro-ophthalmic findings in familial dysautonomia. J Neuroophthalmol. Mar 2012;32(1):23-26. PMID: 21918475
- Okamoto LE, Shibao C, Gamboa A, Choi L, Diedrich A, Raj SR, Black BK, Robertson D, Biaggioni I. Synergistic effect of norepinephrine transporter blockade and alpha-2 antagonism on blood pressure in autonomic failure. Hypertension. Mar 2012;59(3):650-656. PMID: 22311903, PMCID: PMC3312003
- Figueroa JJ, Dyck PJ, Laughlin RS, Mercado JA, Massie R, Sandroni P, Low PA. Autonomic dysfunction in chronic inflammatory demyelinating polyradiculoneuropathy. Neurology. Mar 6 2012;78(10):702-708.PMID: 22357716, PMCID: PMC3306161
- Kaufmann H, Malamut R, Norcliffe-Kaufmann L, Rosa K, Freeman R. The Orthostatic Hypotension Questionnaire (OHQ): validation of a novel symptom assessment scale. Clin Auton Res. Apr 2012;22(2):79-90. PMID: 22045363
- Gamboa A, Okamoto LE, Diedrich A, et al. Sympathetic activation and nitric oxide function in early hypertension. Am J Physiol Heart Circ Physiol. Apr 1 2012;302(7):H1438-1443. PMID: 22287587, PMCID: PMC3330790
- Iodice V, Lipp A, Ahlskog JE, Sandroni P, Fealey RD, Parisi JE, Matsumoto JY, Benarroch EE, Kimpinski K, Singer W, Gehrking TL, Gehrking JA, Sletten DM, Schmeichel AM, Bower JH, Gilman S, Figueroa J, Low PA. Autopsy confirmed multiple system atrophy cases: Mayo experience and role of autonomic function tests. J Neurol Neurosurg Psychiatry. Apr 2012;83(4):453-459. PMID: 22228725, PMCID: PMC3454474
- Gibbons CH, Centi J, Vernino S, Freeman R. Autoimmune autonomic ganglionopathy with reversible cognitive impairment. Arch Neurol. Apr 2012;69(4):461-466. PMID: 22158721, PMCID: PMC3359761
- Kaufmann H, Malamut R, Norcliffe-Kaufmann L, Rosa K, Freeman R. The Orthostatic Hypotension Questionnaire (OHQ): validation of a novel symptom assessment scale. Clin Auton Res. Apr 2012;22(2):79-90. PMID: 22045363
- Muppidi S, Scribner M, Gibbons CH, Adams-Huet B, Spaeth EB, Vernino S. A Unique Manifestation of Pupillary Fatigue in Autoimmune Autonomic Ganglionopathy. Arch Neurol. May 2012;69(5):644-648. PMID: 22232207, PMCID: PMC3433577
- Shibao C, Buchowski MS, Chen KY, Yu C, Biaggioni I. Chronic sympathetic attenuation and energy metabolism in autonomic failure. Hypertension. May 2012;59(5):985-990. PMID: 22469621, PMCID: PMC3383057
- Coffin ST, Black BK, Biaggioni I, Paranjape SY, Orozco C, Black PW, Dupont WD, Robertson D, Raj SR. Desmopressin acutely decreases tachycardia and improves symptoms in the postural tachycardia syndrome. Heart Rhythm. May 3 2012. PMID: 22561596, PMCID: PMC3419341
- Goldstein DS, Holmes C, Sharabi Y. Cerebrospinal fluid biomarkers of central catecholamine deficiency in Parkinson's disease and other synucleinopathies. Brain. Jun 2012;135(Pt 6):19001913. PMID: 22451506, PMCID: PMC3359749
- Jain S, Goldstein DS. Cardiovascular dysautonomia in Parkinson disease: from pathophysiology to pathogenesis. Neurobiol Dis. Jun 2012;46(3):572-580. PMID: 22094370, PMCID: PMC3299874
- Shibao C, Okamoto L, Biaggioni I. Pharmacotherapy of autonomic failure. Pharmacol Ther. Jun 2012;134(3):279-286. PMID: 21664375, PMCID: PMC3358114
- Kimpinski K, Iodice V, Sandroni P, Fealey RD, Vernino S, Low PA. Sudomotor dysfunction in autoimmune autonomic ganglionopathy: a follow-up study. Clin Auton Res. Jun 2012;22(3):131-136. PMID: 22127477, PMCID: PMC3469317
- Kimpinski K, Iodice V, Burton DD, Camilleri M, Mullan BP, Lipp A, Sandroni P, Gehrking TL, Sletten DM, Ahlskog JE, Fealey RD, Singer W, Low PA. The role of autonomic testing in the differentiation of Parkinson's disease from multiple system atrophy. J Neurol Sci. Jun 15 2012;317(1-2):92-96. PMID: 22421352, PMCID: PMC3340456
- Goldstein DS. Stress, allostatic load, catecholamines, and other neurotransmitters in neurodegenerative diseases. Cell Mol Neurobiol. Jul 2012;32(5):661-666. PMID: 22297542, PMCID: PMC4900164
- Lin X, Parisiadou L, Sgobio C, et al. Conditional expression of Parkinson's disease-related mutant alpha-synuclein in the midbrain dopaminergic neurons causes progressive neurodegeneration and degradation of transcription factor nuclear receptor related 1. J Neurosci. Jul 4 2012;32(27):9248-9264. PMID: 22764233, PMCID: PMC3417246
- Kimpinski K, Figueroa JJ, Singer W, Sletten DM, Iodice V, Sandroni P, Fischer PR, Opfer-Gehrking TL, Gehrking JA, Low PA. A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome. Mayo Clin Proc. Aug 2012;87(8):746-752. PMID: 22795533, PMCID: PMC3538485
- Swami SK, Liesinger JT, Shah N, Baddour LM, Banerjee R. Incidence of antibiotic-resistant Escherichia coli bacteriuria according to age and location of onset: a population-based study from Olmsted County, Minnesota. Mayo Clin Proc. Aug 2012;87(8):753-759. PMID: 22795635, PMCID: PMC3538489
- Haddad MR, Macri CJ, Holmes CS, et al. In utero copper treatment for Menkes disease associated with a severe ATP7A mutation. Mol Genet Metab. Sep 2012;107(1-2):222-228. PMID: 22695177, PMCID: PMC3444639
- Kim JS, Oh YS, Lee KS, Kim YI, Yang DW, Goldstein DS. Association of cognitive dysfunction with neurocirculatory abnormalities in early Parkinson disease. Neurology. Sep 25, 2012;79(13):1323-1331. PMID: 22972639, PMCID: PMC3448741
- Siepmann T, Gibbons CH, Illigens BM, Lafo JA, Brown CM, Freeman R. Quantitative pilomotor axon reflex test: a novel test of pilomotor function. Arch Neurol. Nov 2012;69(11):1488-1492. PMID: 22868966, PMCID: PMC3563419
- Arnold AC, Biaggioni I. Management approaches to hypertension in autonomic failure. Curr Opin Nephrol Hypertens. Sep 2012;21(5):481-485. PMID: 22801444, PMCID: PMC3732047
- Parsaik A, Allison TG, Singer W, Sletten DM, Joyner MJ, Benarroch EE, Low PA, Sandroni P. Deconditioning in patients with orthostatic intolerance. Neurology. Oct 2 2012;79(14):14351439. PMID: 22993288, PMCID: PMC3525293
- Axelrod FB, Rolnitzky L, Gold von Simson G, Berlin D, Kaufmann H. A rating scale for the functional assessment of patients with familial dysautonomia (Riley Day syndrome). J Pediatr. Dec 2012;161(6):1160-1165. PMID: 22727867, PMCID: PMC3534733
- Goldstein DS, Sewell L, Holmes C, Pechnik S, Diedrich A, Robertson D. Temporary elimination of orthostatic hypotension by norepinephrine infusion. Clin Auton Res. Dec 2012;22(6):303-306. PMID: 22983778, PMCID: PMC4118053
- Sletten DM, Suarez GA, Low PA, Mandrekar J, Singer W. COMPASS 31: a refined and abbreviated Composite Autonomic Symptom Score. Mayo Clin Proc. Dec 2012;87(12):11961201. PMID: 23218087, PMCID: PMC3541923
- Jordan J, Biaggioni I. Genetic influences on human baroreflex regulation. Auton Neurosci. Dec 24 2012;172(1-2):23-25. PMID: 23167991
- Norcliffe-Kaufmann L, Kaufmann H. Familial dysautonomia (Riley-Day syndrome): when baroreceptor feedback fails. Auton Neurosci. Dec 24 2012;172(1-2):26-30. PMID: 23178195
- Kaufmann H, Goldstein DS. Autonomic dysfunction in Parkinson disease. Handbook of Clinical Neurology. 2013;117:259-278. PMID: 24095131
- Low PA, Tomalia VA, Park KJ. Autonomic function tests: some clinical applications. Journal of Clinical Neurology (Seoul, Korea). Jan 2013;9(1):1-8. PMID: 23346153, PMCID: PMC3543903
- Plash WB, Diedrich A, Biaggioni I, Garland EM, Paranjape SY, Black BK, Dupont WD, Raj SR. Diagnosing postural tachycardia syndrome: comparison of tilt testing compared with standing haemodynamics. Clinical Science (London, England : 1979). Jan 2013;124(2):109-114. PMID: 22931296, PMCID: PMC3478101
- Norcliffe-Kaufmann L, Axelrod FB, Kaufmann H. Developmental abnormalities, blood pressure variability and renal disease in Riley Day syndrome. J Hum Hypertens. Jan 2013;27(1):51-55. PMID: 22129610, PMCID: PMC3318957
- Tijero B, Gomez-Esteban JC, Lezcano E, et al. Cardiac sympathetic denervation in symptomatic and asymptomatic carriers of the E46K mutation in the alpha synuclein gene. Parkinsonism Relat Disord. Jan 2013;19(1):95-100. PMID: 23000061
- Gamboa A, Okamoto LE, Raj SR, Diedrich A, Shibao CA, Robertson D, Biaggioni I. Nitric oxide and regulation of heart rate in patients with postural tachycardia syndrome and healthy subjects. Hypertension. Feb 2013;61(2):376-381. PMID: 23283362, PMCID: PMC3621717
- Norcliffe-Kaufmann LJ, Axelrod FB, Kaufmann H. Cyclic vomiting associated with excessive dopamine in Riley-day syndrome. J Clin Gastroenterol. Feb 2013;47(2):136-138. PMID: 22739220
- Nwazue VC, Raj SR. Confounders of vasovagal syncope: postural tachycardia syndrome. Cardiol Clin. Feb 2013;31(1):101-109. PMID: 23217691, PMCID: PMC3522867
- Nwazue VC, Raj SR. Confounders of vasovagal syncope: orthostatic hypotension. Cardiol Clin. Feb 2013;31(1):89-100. PMID: 23217690, PMCID: PMC3589989
- Macefield VG, Norcliffe-Kaufmann L, Axelrod FB, Kaufmann H. Cardiac-locked bursts of muscle sympathetic nerve activity are absent in familial dysautonomia. J Physiol. Feb 1 2013;591(Pt 3):689-700. PMID: 23165765, PMCID: PMC3577542
- Arnold AC, Okamoto LE, Gamboa A, Shibao C, Raj SR, Robertson D, Biaggioni I. Angiotensin II, independent of plasma renin activity, contributes to the hypertension of autonomic failure. Hypertension. Mar 2013;61(3):701-706. PMID: 23266540, PMCID: PMC3573256
- Bagai K, Wakwe CI, Malow B, Black BK, Biaggioni I, Paranjape SY, Orozco C, Raj SR. Estimation of sleep disturbances using wrist actigraphy in patients with postural tachycardia syndrome. Auton Neurosci. Mar 25 2013. PMID: 23538032, PMCID: PMC3700681
- Norcliffe-Kaufmann L, Martinez J, Axelrod F, Kaufmann H. Hyperdopaminergic crises in familial dysautonomia: a randomized trial of carbidopa. Neurology. Apr 23 2013;80(17):1611-1617. PMID: 23553478, PMCID: PMC3662326
- Garland EM, Cesar TS, Lonce S, Ferguson MC, Robertson D. An increase in renal dopamine does not stimulate natriuresis after fava bean ingestion. Am J Clin Nutr. May 2013;97(5):1144- 1150. PMID: 23553159, PMCID: PMC3628380
- Arnold AC, Okamoto LE, Diedrich A, et al. Low-dose propranolol and exercise capacity in postural tachycardia syndrome: a randomized study. Neurology. May 21 2013;80(21):19271933. PMID: 3616163, PMCID: PMC3716342
- Macefield VG, Norcliffe-Kaufmann LJ, Axelrod FB, Kaufmann H. Relationship between proprioception at the knee joint and gait ataxia in HSAN III. Mov Disord. Jun 2013;28(6):823827. PMID: 23681701, PMCID: PMC3694996
- Raj SR. Postural tachycardia syndrome (POTS). Circulation. Jun 11 2013;127(23):2336-2342. PMID: 23753844, PMCID: PMC3756553
- Shibao C, Lipsitz LA, Biaggioni I. Evaluation and treatment of orthostatic hypotension. Journal of the American Society of Hypertension: JASH. Jul-Aug 2013;7(4):317-324. PMID: 23721882, PMCID: PMC3769179
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- Parsaik AK, Ahlskog JE, Singer W, et al. Central hyperadrenergic state after lightning strike. Clin Auton Res. Aug 2013;23(4):169-173. PMID: 23761114, PMCID: PMC3737249
- Phillips L, Robertson D, Melson MR, Garland EM, Joos KM. Pediatric ptosis as a sign of treatable autonomic dysfunction. Am J Ophthalmol. Aug 2013;156(2):370-374 e372. PMID: 23622564, PMCID: PMC3720787
- Schroeder C, Jordan J, Kaufmann H. Management of neurogenic orthostatic hypotension in patients with autonomic failure. Drugs. Aug 2013;73(12):1267-1279. PMID: 23857549
- Green EA, Raj V, Shibao CA, et al. Effects of norepinephrine reuptake inhibition on postural tachycardia syndrome. Journal of the American Heart Association. Oct 2013;2(5):e000395. PMID: 24002370, PMCID: PMC3835251
- Shibao C, Grijalva CG, Lipsitz LA, Biaggioni I, Griffin MR. Early discontinuation of treatment in patients with orthostatic hypotension. Auton Neurosci. Oct 2013;177(2):291-296. PMID: 24008021, PMCID: PMC3988581
- Wang N, Gibbons CH, Lafo J, Freeman R. α -Synuclein in cutaneous autonomic nerves. Neurology. Oct 29 2013;81(18):1604-1610. PMID: 24089386, PMCID: PMC3806913
- Li H, Yu X, Liles C, et al. Autoimmune basis for postural tachycardia syndrome. Journal of the American Heart Association. 2014;3(1):e000755. PMID: 24572257, PMCID: PMC3959717
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- Palma JA, Kaufmann H. Autonomic disorders predicting Parkinson's disease. Parkinsonism Relat Disord. Jan 2014;20 Suppl 1:S94-98. PMID: 24262198, PMCID: PMC4122262
- Wada N, Singer W, Gehrking TL, et al. Determination of vagal baroreflex sensitivity in normal subjects. Muscle Nerve. Jan 29 2014. PMID: 24477673, PMCID: PMC4115054
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- Raj Md Msci SR. Highlights in clinical autonomic neurosciences: Insights into the roles of the carotid body and carotid baroreceptor. Auton Neurosci. Feb 20 2014. PMID: 24650802, PMCID: PMC4058374
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- Mendoza-Santiesteban CE, Hedges Iii TR, Norcliffe-Kaufmann L, Axelrod F, Kaufmann H. Selective retinal ganglion cell loss in familial dysautonomia. J Neurol. Apr 2014;261(4):702709. PMID: 24487827
- Mai TH, Wu J, Diedrich A, Garland EM, Robertson D. Calcitonin gene-related peptide (CGRP) in autonomic cardiovascular regulation and vascular structure. Journal of the American Society of Hypertension: JASH. May 2014;8(5):286-296. PMID: 24746612, PMCID: PMC4072204
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- Pandey AK, Kanagasundaram A, Raj SR. Deglutition syncope: does fluid temperature matter? J Am Coll Cardiol. May 27 2014;63(20):e55. PMID: 24703921, PMCID: PMC4059494
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- Macefield VG, Norcliffe-Kaufmann L, Loken L, Axelrod FB, Kaufmann H. Disturbances in affective touch in hereditary sensory & autonomic neuropathy type III. Int J Psychophysiol. Jul 2014;93(1):56-61. PMID: 24726998, PMCID: PMC4078239
- Gamboa A, Okamoto LE, Arnold AC, et al. Autonomic Blockade Improves Insulin Sensitivity in Obese Subjects. Hypertension. Jul 7 2014. PMID: 25001269, PMCID: PMC4162826
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- Coffin ST, Raj SR. Non-invasive management of vasovagal syncope. Auton Neurosci. Sep 2014;184:27-32. PMID: 24996861, PMCID: PMC4151906
- Raj SR. How did the simple faint get so complicated? Syncope in 2014. Auton Neurosci. Sep 2014;184:1-2. PMID: 25042646, PMCID: PMC4151883
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- Biaggioni I. New developments in the management of neurogenic orthostatic hypotension. Curr Cardiol Rep. Nov 2014;16(11):542. PMID: 25303896
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- Palma JA, Norcliffe-Kaufmann L, Fuente-Mora C, Percival L, Mendoza-Santiesteban C, Kaufmann H. Current treatments in familial dysautonomia. Expert Opin Pharmacother. Dec 2014;15(18):2653-2671. PMID: 25323828, PMCID: PMC4236240
- Ramirez CE, Okamoto LE, Arnold AC, et al. Efficacy of atomoxetine versus midodrine for the treatment of orthostatic hypotension in autonomic failure. Hypertension. Dec 2014;64(6):1235-1240. PMID: 25185131, PMCID: PMC4231172
- Celedonio JE, Arnold AC, Dupont WD, et al. Residual sympathetic tone is associated with reduced insulin sensitivity in patients with autonomic failure. Clin Auton Res. 2015;25(5):309-315. PMID: 26359268, PMCID: PMC4785595
- Marinos A, Celedonio JE, Ramirez CE, et al. Time-Course Analysis of Flow Mediated Dilation for the Evaluation of Endothelial Function After a High-Fat Meal in African Americans. Journal of the American Heart Association. 2015;4(11). PMID: 26541392, PMCID: PMC4845211
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- Jelani QU, Norcliffe-Kaufmann L, Kaufmann H, Katz SD. Vascular endothelial function and blood pressure regulation in afferent autonomic failure. Am J Hypertens. Feb 2015;28(2):166-172. PMID: 25128693, PMCID: PMC4357802
- Norcliffe-Kaufmann L, Palma JA, Krismer F. Multiple system atrophy: the case for an international collaborative effort. Clin Auton Res. Feb 2015;25(1):81-83. PMID: 25862257, PMCID: PMC4497581
- Figueroa JJ, Singer W, Sandroni P, et al. Effects of patient-controlled abdominal compression on standing systolic blood pressure in adults with orthostatic hypotension. Arch Phys Med Rehabil. Mar 2015;96(3):505-510. PMID: 25448247, PMCID: PMC4339489
- Gutierrez JV, Norcliffe-Kaufmann L, Kaufmann H. Brainstem reflexes in patients with familial dysautonomia. Clin Neurophysiol. Mar 2015;126(3):626-633. PMID: 25082092
- Palma JA, Gomez-Esteban JC, Norcliffe-Kaufmann L, et al. Orthostatic hypotension in Parkinson disease: how much you fall or how low you go? Mov Disord. Apr 15 2015;30(5):639-645. PMID: 25678194, PMCID: PMC4397106
- Norcliffe-Kaufmann L, Katz SD, Axelrod F, Kaufmann H. Norepinephrine deficiency with normal blood pressure control in congenital insensitivity to pain with anhidrosis. Ann Neurol. May 2015;77(5):743-752. PMID: 25627679, PMCID: PMC5074379
- Piccione EA, Sletten DM, Staff NP, Low PA. Autonomic system and amyotrophic lateral sclerosis. Muscle Nerve. May 2015;51(5):676-679. PMID: 25211238, PMCID: PMC4362936
- Gamboa A, Paranjape SY, Black BK, et al. Inspiratory resistance improves postural tachycardia: a randomized study. Circ Arrhythm Electrophysiol. Jun 2015;8(3):651-658. PMID: 25792354, PMCID: PMC4472504
- Kaufmann H, Norcliffe-Kaufmann L, Palma JA. Droxidopa in neurogenic orthostatic hypotension. Expert Rev Cardiovasc Ther. Jun 19 2015:1-17. PMID: 26092297, PMCID: PMC4509799
- Mar PL, Shibao CA, Garland EM, et al. Neurogenic hyperadrenergic orthostatic hypotension: a newly recognized variant of orthostatic hypotension in older adults with elevated norepinephrine (noradrenaline). Clinical Science (London, England : 1979). Jul 2015;129(2):107-116. PMID: 25706983, PMCID: PMC4417057
- Cykowski MD, Coon EA, Powell SZ, et al. Expanding the spectrum of neuronal pathology in multiple system atrophy. Brain. Aug 2015;138(Pt 8):2293-2309. PMID: 25981961, PMCID: PMC4840945
- Garland EM, Celedonio JE, Raj SR. Postural Tachycardia Syndrome: Beyond Orthostatic Intolerance. Curr Neurol Neurosci. Rep. Sep 2015;15(9):60. PMID: 26198889, PMCID: PMC4664448
- Mendoza-Santiesteban CE, Palma JA, Martinez J, Norcliffe-Kaufmann L, Hedges TR, 3rd, Kaufmann H. Progressive retinal structure abnormalities in multiple system atrophy. Mov Disord. Sep 11 2015. PMID: 26359930, PMCID: PMC4568758
- Arnold AC, Robertson D. Defective Wnt Signaling: A Potential Contributor to Cardiometabolic Disease? Diabetes. Oct 2015;64(10):3342-3344. PMID: 26405272, PMCID: PMC4587636
- Palma JA, Roda R, Norcliffe-Kaufmann L, Kaufmann H. Increased frequency of rhabdomyolysis in familial dysautonomia. Muscle Nerve. Nov 2015;52(5):887-890. PMID: 26202308, PMCID: PMC4596763
- Coon EA, Sletten DM, Suarez MD, et al. Clinical features and autonomic testing predict survival in multiple system atrophy. Brain. Dec 2015;138(Pt 12):3623-3631. PMID: 26369944, PMCID: PMC4840547
- Labbe C, Heckman MG, Lorenzo-Betancor O, et al. MAPT haplotype diversity in multiple system atrophy. Parkinsonism Relat Disord. 2016. PMID: 27374978, PMCID: PMC5007155
- Loavenbruck AJ, Singer W, Mauermann ML, et al. Transthyretin amyloid neuropathy has earlier neural involvement but better prognosis than primary amyloid counterpart: an answer to the paradox? Ann Neurol. 2016. PMID: 27422051, PMCID: PMC5016242
- Merkel PA, Manion M, Gopal-Srivastava R, et al. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66. PMID: 27194034, PMCID: PMC4870759
- Okamoto LE, Diedrich A, Baudenbacher FJ, et al. Efficacy of Servo-Controlled Splanchnic Venous Compression in the Treatment of Orthostatic Hypotension: A Randomized Comparison With Midodrine. Hypertension. 2016;68(2):418-426. PMID: 27271310, PMCID: PMC4945429
- Norcliffe-Kaufmann L, Kaufmann H, Martinez J, Katz SD, Tully L, Reynolds HR. Autonomic Findings in Takotsubo Cardiomyopathy. Am J Cardiol. Jan 15 2016;117(2):206-213. PMID: 26743349
- Arnold AC, Okamoto LE, Gamboa A, et al. Mineralocorticoid Receptor Activation Contributes to the Supine Hypertension of Autonomic Failure. Hypertension. Feb 2016;67(2):424-429. PMID: 26644241, PMCID: PMC4748950
- Bajaj S, Krismer F, Palma JA, et al. Diffusion-weighted MRI distinguishes Parkinson disease from the parkinsonian variant of multiple system atrophy: A systematic review and metaanalysis. PLoS ONE. 2017;12(12):e0189897. PMID: 29287113, PMCID: PMC5747439
- Coon EA, Fealey RD, Sletten DM, et al. Anhidrosis in multiple system atrophy involves pre- and postganglionic sudomotor dysfunction. Mov Disord. 2017;32(3):397-404. PMID: 27859565, PMCID: PMC5483990
- Coon EA, Low PA. Pure autonomic failure without alpha-synuclein pathology: an evolving understanding of a heterogeneous disease. Clin Auton Res. 2017;27(2):67-68. PMID: 28236005, PMCID: PMC5390280
- Dillon RC, Palma JA, Spalink CL, et al. Dexmedetomidine for refractory adrenergic crisis in familial dysautonomia. Clin Auton Res. 2017;27(1):7-15. PMID: 27752785, PMCID: PMC5292083
- Gibbons CH, Schmidt P, Biaggioni I, et al. The recommendations of a consensus panel for the screening, diagnosis, and treatment of neurogenic orthostatic hypotension and associated supine hypertension. J Neurol. 2017;264(8):1567-1582. PMID: 28050656, PMCID: PMC5533816
- Gibbons CH, Wang N, Freeman R. Cutaneous Alpha-Synuclein From Paraffin Embedded Autopsy Specimens in Parkinson's Disease. Journal of Parkinson's Disease. 2017;7(3):503-509. PMID: 28582870, PMCID: PMC5909847
- Grijalva CG, Biaggioni I, Griffin MR, Shibao CA. Fludrocortisone Is Associated With a Higher Risk of All-Cause Hospitalizations Compared With Midodrine in Patients With Orthostatic Hypotension. Journal of the American Heart Association. 2017;6(10). PMID: 29025750, PMCID: PMC5721876
- Kaufmann H, Norcliffe-Kaufmann L, Palma JA. Pure autonomic failure vs. manifest CNS synucleinopathy: Relevance of stridor and autonomic biomarkers. Ann Neurol. 2017. PMID: 28472861, PMCID: PMC5499678
- Kaufmann H, Norcliffe-Kaufmann L, Palma JA, et al. Natural history of pure autonomic failure: A United States prospective cohort. Ann Neurol. 2017;81(2):287-297. PMID: 28093795, PMCID: PMC5323269
- Kaufmann H, Palma JA. Neurogenic orthostatic hypotension: the very basics. Clin Auton Res. 2017;27(Suppl 1):39-43. PMID: 28620715, PMCID: PMC5524853
- Mendoza-Santiesteban CE, Gabilondo I, Palma JA, Norcliffe-Kaufmann L, Kaufmann H. The Retina in Multiple System Atrophy: Systematic Review and Meta-Analysis. Frontiers in Neurology. 2017;8:206. PMID: 28596752, PMCID: PMC5443142
- Mendoza-Santiesteban CE, Palma JA, Hedges TR, 3rd, et al. Pathological Confirmation of Optic Neuropathy in Familial Dysautonomia. J Neuropathol Exp Neurol. 2017;76(3):238-244. PMID: 28395083, PMCID: PMC5409127
- Mendoza-Santiesteban CE, Palma JA, Ortuno-Lizaran I, Cuenca N, Kaufmann H. Pathologic confirmation of retinal ganglion cell loss in multiple system atrophy. Neurology. 2017. PMID: 28490649, PMCID: PMC5467953
- Palma JA, Kaufmann H. Epidemiology, Diagnosis, and Management of Neurogenic Orthostatic Hypotension. Movement Disorders Clinical Practice. 2017;4(3):298-308. PMID: 28713844, PMCID: PMC5506688
- Palma JA, Norcliffe-Kaufmann L, Perez MA, Spalink CL, Kaufmann H. Sudden Unexpected Death during Sleep in Familial Dysautonomia: A case-control study. Sleep. 2017. PMID: 28521050, PMCID: PMC5806542
- Palma JA, Spalink C, Barnes EP, Norcliffe-Kaufmann L, Kaufmann H. Neurogenic dysphagia with undigested macaroni and megaesophagus in familial dysautonomia. Clin Auton Res. 2017. PMID: 29196937, PMCID: PMC5807189
- Shibao CA, Kaufmann H. Pharmacotherapy of Cardiovascular Autonomic Dysfunction in Parkinson Disease. CNS Drugs. 2017;31(11):975-989. PMID: 29076058, PMCID: PMC5809001
- Spalink CL, Barnes E, Palma JA, Norcliffe-Kaufmann L, Kaufmann H. Intranasal dexmedetomidine for adrenergic crisis in familial dysautonomia. Clin Auton Res. 2017;27(4):279-282. PMID: 28674865, PMCID: PMC5555081
- Wallach AI, Park H, Rucker JC, Kaufmann H. Supranuclear gaze palsy and horizontal ocular oscillations in Creutzfeldt-Jakob disease. Neurology. 2017;89(7):749. PMID: 28808164, PMCID: PMC5562964
- Aluma BB, Norcliffe-Kaufmann L, Sarouk I, et al. Resting Energy Expenditure in Patients with Familial Dysautonomia: A Preliminary Study. J Pediatr Gastroenterol Nutr. 2018. PMID: 30334929
- Bar-Aluma BE, Efrati O, Kaufmann H, Palma JA, Norcliffe-Kaufmann L. A Controlled Trial of Inhaled Bronchodilators in Familial Dysautonomia. Lung. 2018;196(1):93-101. PMID: 29234869
- Farrell MC, Brenner AS, Shibao CA. Diagnostic treatment dilemma: baroreflex failure or autoimmune autonomic ganglionopathy? Clin Auton Res. 2018. PMID: 30151691
- Kazachkov M, Palma JA, Norcliffe-Kaufmann L, et al. Respiratory care in familial dysautonomia: Systematic review and expert consensus recommendations. Respir Med. 2018;141:37-46. PMID: 30053970, PMCID: PMC6084453
- Kaufmann H, Jordan J. The Clinical Autonomic Research journal 2017 and onward. Clin Auton Res. 2017;27(1):1-2. PMID: 28124174, PMCID: PMC5488329
- Coon EA, Ahlskog JE, Silber MH, et al. Do selective serotonin reuptake inhibitors improve survival in multiple system atrophy? Parkinsonism Relat Disord. 2018;48:51-53. PMID: 29254663, PMCID: PMC5826868
- Cutsforth-Gregory JK, McKeon A, Coon EA, et al. Ganglionic Antibody Level as a Predictor of Severity of Autonomic Failure. Mayo Clin Proc. 2018;93(10):1440-1447. PMID: 30170741, PMCID: PMC6173625
- Gutierrez JV, Kaufmann H, Palma JA, Mendoza-Santiesteban C, Macefield VG, NorcliffeKaufmann L. Founder mutation in IKBKAP gene causes vestibular impairment in familial dysautonomia. Clin Neurophysiol. 2018;129(2):390-396. PMID: 29289840
- McKay JH, Cheshire WP. First symptoms in multiple system atrophy. Clin Auton Res. 2018. PMID: 29313153, PMCID: PMC5859695
- Mehr SE, Barbul A, Shibao CA. Gastrointestinal symptoms in postural tachycardia syndrome: a systematic review. Clin Auton Res. 2018. PMID: 29549458
- Norcliffe-Kaufmann L, Kaufmann H, Palma JA, et al. Orthostatic Heart Rate Changes in Patients with Autonomic Failure caused by Neurodegenerative Synucleinopathies. Ann Neurol. 2018. PMID: 29405350, PMCID: PMC5867255
- Palma JA. Autonomic dysfunction in Parkinson's disease and other synucleinopathies: Introduction to the series. Mov Disord. 2018;33(3):347-348. PMID: 29436737, PMCID: PMC5840012
- Palma JA, Kaufmann H. Treatment of autonomic dysfunction in Parkinson disease and other synucleinopathies. Mov Disord. 2018;33(3):372-390. PMID: 29508455, PMCID: PMC5844369
- Palma JA, Norcliffe-Kaufmann L, Kaufmann H. Diagnosis of multiple system atrophy. Auton Neurosci. 2018;211:15-25. PMID: 29111419, PMCID: PMC5869112
- Raj SR, Robertson D. Moving from the present to the future of Postural Tachycardia Syndrome - What we need. Auton Neurosci. 2018;215:126-128. PMID: 30539785, PMCID: PMC6293980
- Singh K, Palma JA, Kaufmann H, et al. Prevalence and characteristics of sleep-disordered breathing in familial dysautonomia. Sleep Medicine. 2018;45:33-38. PMID: 29680425, PMCID: PMC5918267
- Wenning G, Trojanowski JQ, Kaufmann H, Wisniewski T, Rocca WA, Low PA. Is multiple system atrophy an infectious disease? Ann Neurol. 2018. PMID: 29293269, PMCID: PMC5876125
- Kaufmann H, Norcliffe-Kaufmann L, Palma JA. Improvement of daytime hypercapnia with nocturnal non-invasive ventilation in familial dysautonomia. Clin Auton Res. 2019. PMID: 30637592
- Palma JA, Gileles-Hillel A, Norcliffe-Kaufmann L, Kaufmann H. Chemoreflex failure and sleepdisordered breathing in familial dysautonomia: Implications for sudden death during sleep. Auton Neurosci. 2019;218:10-15. PMID: 30890343, PMCID: PMC6428199
- Riboldi GM, Palma JA, Cortes E, et al. Early-onset pathologically proven multiple system atrophy with LRRK2 G2019S mutation. Mov Disord. 2019. PMID: 31077434
- Won E, Palma JA, Kaufmann H, et al. Quantitative magnetic resonance evaluation of the trigeminal nerve in familial dysautonomia. Clin Auton Res. 2019. PMID: 30783821
Bone Marrow Failure Consortium
Abstracts Presented at Conferences
- Epling-Burnette P, Xhen X, Bai F, Lubomir S, Ku E, Painter J, JianXiang Z, Edwards T, Julie D, Lynn M, Loughran T, S W. Aberrant NK receptor signaling associated with large granular lymphoycte and primary pulmonary hypertension. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Sekeres M, List A, Cuthbertson D, Paquette R, Loughran T, Maciejewski J. Preliminary Results from a Phase I study of Revlimid (Lenalidomide) in combination with Vidaza (Azacitidine) in patients with advanced myelodysplastic syndromes (MDS). Paper presented at: American Society of Hematology; December 8-11, 2007; Altanta, GA.
- Epling-Burnette P, Sokol L, Moscinski L, Elkabani M, Bai F, Blaskovich M, Zou J, Painter J, Sebti S, Loughran T. First clinical report on Tipifarnib for the treatment of T-large granular lymphocyte (LGL) leukemia. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Wei S, Rocha K, Williams A, Chen X, Burnette P, Djeu J, Liu Q, Byrd J, Sokol L, Lawrence N, Pireddu R, Dewald G, Maciejewski J, List A. Gene dosage of the cell cycle regulatory phosphatases Cdc25C and PP2A determines sensitivity to lenalidomide in del(5q) MDS. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Bai F, Zou J, Wei S, Painter J, Blaskovich M, Sebti S, Loughran T, Epling-Burnette P. Th2 polarization induced by the farnesyltransferase inhibitor Tipifarnib (Zarnestra, R115777) through suppression of t-bet. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Painter J, Costellanos A, Bai F, Wei S, Loughran T, Epling-Burnette P. Constitutive activation of ras and mitogen-activated protein kinase (MAPK/ERK) in LGL leukemia unrelated to activating mutations in N and KRas genes. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta.
- Nyland S, Cuthbertson D, Loughran T. Elevated fas ligand and BA21 serorecognition as disease correlates in bone marrow failure disorders: taking advantage of the LGL leukemia model. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Gondek L, Tiu R, Wlodarski M, O’Keefe C, McDevitt M, Maciejewski J. Enhancement of cytogenetic diagnosis of myeloid disorders through application of SNP-array-based karyotyping. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- O’Keefe C, Gondek L, Woodarski M, Karp J, McDevitt M, Maciejewski J. Can genomic copy number variants be a part of complex genetic traits predisposing to marrow failure? Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta.
- Gondek L, Dunbar A, O’Keefe C, McDevitt M, Batista D, Theil K, Maciejewski J. SNP-A karyotyping facilitates improved mapping of deletions and uniparental disomy within the long arm of Chromosome 5 in myeloid disorders. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Serio B, Ramsingh G, Tiu R, Risitano A, Sekeres M, Maciejewski J. Immunogenetic analysis reveals the association of INF (+874 A/T) hypersecretor genotype in AA and a low frequency of KIR-2DL3/C1 mismatch in responders to immunosuppression. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
Journal Articles
- Nearman ZP, Wlodarski M, Jankowska AM, Howe E, Narvaez Y, Ball E, Maciejewski JP. Immunogenetic factors determining the evolution of T-cell large granular lymphocyte leukaemia and associated cytopenias. Br J Haematol. Jan 2007;136(2):237-248. PMID: 17156396
- Sekeres MA, Fu AZ, Maciejewski JP, Golshayan AR, Kalaycio ME, Kattan MW. A Decision analysis to determine the appropriate treatment for low-risk myelodysplastic syndromes. Cancer. Mar 15 2007;109(6):1125-1132. PMID: 17265521
- Golshayan AR, Jin T, Maciejewski J, Fu AZ, Bershadsky B, Kattan MW, Kalaycio ME, Sekeres MA. Efficacy of growth factors compared to other therapies for low-risk myelodysplastic syndromes. Br J Haematol. Apr 2007;137(2):125-132. PMID: 17391492
- Wlodarski MW, Nearman Z, Jiang Y, Lichtin A, Maciejewski JP. Clonal predominance of CD8(+) T cells in patients with unexplained neutropenia. Exp Hematol. Mar 2008;36(3):293-300. PMID: 18279717, PMCID: PMC2643087
- Uchida K, Nakata K, Suzuki T, Luisetti M, Watanabe M, Koch DE, Stevens CA, Beck DC, Denson LA, Carey BC, Keicho N, Krischer JP, Yamada Y, Trapnell BC. Granulocyte/macrophage colonystimulating factor autoantibodies and myeloid cell immune functions in healthy individuals. Blood. Oct 9 2008. PMID: 20224064, PMCID: PMC2902758
- Sekeres MA, Schoonen WM, Kantarjian H, List A, Fryzek J, Paquette R, Maciejewski JP. Characteristics of US patients with myelodysplastic syndromes: results of six cross-sectional physician surveys. J Natl Cancer Inst. Nov 5 2008;100(21):1542-1551. PMID: 18957672, PMCID: PMC2579314
- Epling-Burnette PK, Sokol L, Chen X, Bai F, Zhou J, Blaskovich MA, Zou J, Painter JS, Edwards TD, Moscinski L, Yoder JA, Djeu JY, Sebti S, Loughran TP, Jr., Wei S. Clinical improvement by farnesyltransferase inhibition in NK large granular lymphocyte leukemia associated with imbalanced NK receptor signaling. Blood. Dec 1 2008;112(12):4694-4698. PMID: 18791165, PMCID: PMC2597136
- Dunbar AJ, Gondek LP, O'Keefe CL, Makishima H, Rataul MS, Szpurka H, Sekeres MA, Wang XF, McDevitt MA, Maciejewski JP. 250K single nucleotide polymorphism array karyotyping identifies acquired uniparental disomy and homozygous mutations, including novel missense substitutions of c-Cbl, in myeloid malignancies. Cancer Res. Dec 15 2008;68(24):10349-10357. PMID: 19074904, PMCID: PMC2668538
- Sekeres MA, Maciejewski JP, Giagounidis AA, Wride K, Knight R, Raza A, List AF. Relationship of treatment-related cytopenias and response to lenalidomide in patients with lower-risk myelodysplastic syndromes. J Clin Oncol. Dec 20 2008;26(36):5943-5949. PMID: 19018091, PMCID: PMC2645116
- Sekeres MA, Elson P, Kalaycio ME, Advani AS, Copelan EA, Faderl S, Kantarjian HM, Estey E. Time from diagnosis to treatment initiation predicts survival in younger, but not older, acute myeloid leukemia patients. Blood. Jan 1 2009;113(1):28-36. PMID: 18827183, PMCID: PMC2614639
- Uchida K, Nakata K, Suzuki T, Luisetti M, Watanabe M, Koch DE, Stevens CA, Beck DC, Denson LA, Carey BC, Keicho N, Krischer JP, Yamada Y, Trapnell BC. Granulocyte/macrophage-colonystimulating factor autoantibodies and myeloid cell immune functions in healthy subjects. Blood. Mar 12 2009;113(11):2547-2556. PMID: 19282464, PMCID: PMC2656275
- Zou JX, Rollison DE, Boulware D, Chen DT, Sloand EM, Pfannes LV, Goronzy JJ, Bai F, Painter JS, Wei S, Cosgrove D, List AF, Epling-Burnette PK. Altered naive and memory CD4+ T-cell homeostasis and immunosenescence characterize younger patients with myelodysplastic syndrome. Leukemia. Jul 2009;23(7):1288-1296. PMID: 19282834, PMCID: PMC3252820
- Mohan SR, Clemente MJ, Afable M, Cazzolli HN, Bejanyan N, Wlodarski MW, Lichtin AE, Maciejewski JP. Therapeutic implications of variable expression of CD52 on clonal cytotoxic T cells in CD8+ large granular lymphocyte leukemia. Haematologica. Oct 2009;94(10):1407-1414. PMID: 19794084, PMCID: PMC2754957
- Sekeres MA, Steensma DP. Defining prior therapy in myelodysplastic syndromes and criteria for relapsed and refractory disease: implications for clinical trial design and enrollment. Blood. Sep 24 2009;114(13):2575-2580. PMID: 19605847, PMCID: PMC2756119
- Jasek M, Gondek LP, Bejanyan N, Tiu R, Huh J, Theil KS, O'Keefe C, McDevitt MA, Maciejewski JP. TP53 mutations in myeloid malignancies are either homozygous or hemizygous due to copy number-neutral loss of heterozygosity or deletion of 17p. Leukemia. Jan 2010;24(1):216-219. PMID: 19759556, PMCID: PMC2806506
- Uchida K, Carey B, Suzuki T, Nakata K, Trapnell B. Response: Granulocyte/macrophage colonystimulating factor autoantibodies and myeloid cell immune functions in healthy persons. Blood. Jan 14 2010;115(2):431-433. PMID: 20075172, PMCID: PMC2808163
- Nyland SB, Krissinger DJ, Clemente MJ, et al. Seroreactivity to LGL leukemia-specific epitopes in aplastic anemia, myelodysplastic syndrome and paroxysmal nocturnal hemoglobinuria: results of a bone marrow failure consortium study. Leuk Res. May 2012;36(5):581-587. PMID: 22386729, PMCID: PMC3312981
Cholestatic Liver Disease Consortium
Abstracts Presented at Conferences
- Shneider B, Brown M, Sokol R, Whitington P, Schwarz K, Squires R, Bucuvalas J, Haber B, Sheperd R, Rosenthal P, Robuck P, BARC. A multi-center analysis of outcome at 24 months of age in children with biliary atresia in the United States. Paper presented at: Annual Meeting of the American Association for the Study of Liver Diseases; November, 2004; Boston, MA.
- Haber B, Brown M, Shneider B, Sokol R, Whitington P, Derusso P, Squires R, Bezerra J, Sheperd R, Rosenthal P, Robuck P, BARC. Patient demographics and clinical practices in a US multicenter study of biliary atresia. Paper presented at: Annual Meeting of the American Association for the Study of Liver Diseases; November 2004; Boston, MA.
- DeRusso P, Ye W, Haber B, Shneider B, Sokol R, Whitington P, Squires R, Bezerra J, Shepherd R, Rosenthal P, Hoofnagle J. Early growth failure after portoenterostomy is associated with liver transplantation or death in infants with biliary atresia. Paper presented at: 56th Annual Meeting of the American Association for the Study of Liver Diseases; November, 2005; San Francisco, CA.
- Shneider B, Norton K, Superina R, Erlichman J, Magee J, Bucuvalas J, Whitington P, Rosenthal P, Squires R, Benson J, Karpen S, Shepherd R, Sokol R. Diagnostic imaging in neonatal cholestasis: a multi-center prospective analysis. Paper presented at: AASLD Annual Meeting; October, 2006; Boston, MA.
- Russo P, Boitnott J, Bove K, Brown M, Finegold M, J H, Jaffe R, Kim G, Magee J, Magid M, MelinAldana H, Sokol R, White F. A multi-institutional study of interobserver agreement on the histologic diagnosis of biliary obstruction in liver biopsies of cholestatic infants less than six months of age. Paper presented at: AASLD Annual Meeting; October, 2006; Boston, MA.
- Shneider B, Shepherd R, Magee J, Bucuvalas J, Haber B, Karpen S, Rosenthal P, Schwarz K, Suchy F, Whitington P, Sokol R. Discriminating features of biliary atresia-a prospective multicentered analysis. Paper presented at: AASLD Annual Meeting2007; Boston, MA.
- Miethke A, Matte U, Liu C, Balistreri W, Ryckman F, Bezerra J. Gene mutations and clinical outcome after biliary diversion surgery for intractable pruritus in children with intrahepatic cholestasis. Paper presented at: NASPGHAN annual meeting; October, 2007; Salt Lake City, UT.
- Gondek L, Tiu R, Wlodarski M, O’Keefe C, McDevitt M, Maciejewski J. Enhancement of cytogenetic diagnosis of myeloid disorders through application of SNP-array-based karyotyping. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Gondek L, Dunbar A, O’Keefe C, McDevitt M, Batista D, Theil K, Maciejewski J. SNP-A karyotyping facilitates improved mapping of deletions and uniparental disomy within the long arm of Chromosome 5 in myeloid disorders. Paper presented at: American Society of Hematology; December 8-11, 2007; Atlanta, GA.
- Haber B, Fredericks E, Magee J, Bezerra JA, Karpen S, Kerkar N, Rosenthal P, Schwarz K, Shepherd R, Shneider B, Whitington P, Robuck P, Sokol R, BARC. Predictors of neurodevelopmental outcome in non-transplanted children with biliary atresia at one year of age. Paper presented at: AASLD Annual Meeting; November 2008.
- Schwarz K, Shepherd R, Magee J, Rosenthal P, Mack C, Raghumathan T, Bezerra J, Haber B, Karpen S, Suchy F, Whitington P, Robuck P, Sokol R, BARC. Clinical and demographic features of three major biliary atresia phenotypes in the BARC study. Paper presented at: AASLD Annual Meeting; November 2008.
- Heubi J, Setchell K, Rosenthal P, Shah S, Buckley D, Jha P, Zhang W, Potter C, Suskind D, Bull L. Oral glycocholic acid treatment of patients with bile acid amidation defects improves growth and fat-soluble vitamin absorption; 2009, 2009.
- Sokol R, Hines J. The Cholestatic Liver Disease Consortium (CLiC): a multi-institutional collaboration to better understand and treat liver disease in children. Paper presented at: NIH conference “Advancing Rare Diseases Research through Networks and Collaboration.”; July 16, 2009; Bethesda, MD.
- Hahn C, Sokol R, Hines J. The patient advocacy group committee of the Cholestatic Liver Disease Consortium: giving families, parents and patients a partnership with researchers. Paper presented at: NIH conference “Advancing Rare Diseases Research through Networks and Collaboration.” July 16, 2009; Bethesda, MD.
- Bass LM, Xie H, Yu S, Malladi P, Bento-Soares M, Whitington P. Expression in progressive familial intrahepatic cholestasis. Paper presented at: AASLD Liver Meeting; Oct. 30-Nov. 1, 2009; Boston, MA.
- Sundaram S, Fredericks E, Kamath B, Haber B, Raghumathan T, Magee J, Bezerra J, Karpen S, Kerkar N, Rosethal P, Schwarz K, Shepherd R, Schneider B, Whitington P, Robuck P, Sokol R, BARC. Cross sectional assessment of quality of life in biliary aresia patients ages 2-25 years. Paper presented at: AASLD Annual Meeting; November, 2009; Boston, MA.
- Sokol R, Magee J, Hahn C, Robuck P. The new Childhood Liver Disease Research and Education Network (ChiLDREN): a new cooperative effort between NIDDK, academic centers and patient advocacy groups. Paper presented at: NASPGHAN Annual Meeting; November 2009; National Harbor, MD.
- Shneider B, Abel R, Raghunathan T, Magee J, Bezerra J, Haber B, Karpen S, Rosenthal P, Schwarz K, Shepherd R, Suchy F, Whitington P, Robuck P, Sokol R, BARC. A prospective multicentered investigation of vitamin supplementation in infants with biliary atresia: interim analysis from the Biliary Atresia Research Consortium (BARC). Paper presented at: AASLD Annual Meeting; November 2009; Boston, MA.
- Shneider B, Abel R, Haber B, Karpen S, Magee J, Romero R, Schwartz K, Bass L, Kerkar N, Miethke A, Rosenthal P, Turmelle Y, Sokol R. Multi-center analysis of portal hypertension in 163 children with biliary atresia. Paper presented at: Annual Meeting of the American Association for the Study of Liver Disease; November 2010; Boston, MA.
Conference Proceedings
- Bass LM, Malladi P, Whitington P. FXR response in cholestatic liver disease. AASLD Abstracts 676–894. Hepatology. 2008;48(S1):609A-706A.
Journal Articles
- Sokol RJ. New North American research network focuses on biliary atresia and neonatal liver disease. J Pediatr Gastroenterol Nutr. Jan 2003;36(1):1. PMID: 12537011
- Hoofnagle J. Biliary Atresia Research Consortium (BARC). Hepatology. 2004;39(4). PMID: 15057888
- Sokol RJ, Mack CL. Optimizing outcomes and bridging biliary atresia into adulthood. Hepatology. Feb 2005;41(2):231-233. PMID: 15657917
- Mack CL, Sokol RJ. Unraveling the pathogenesis and etiology of biliary atresia. Pediatr Res. May 2005;57(5 Pt 2):87R-94R. PMID: 15817506
- Shneider BL, Brown MB, Haber B, Whitington PF, Schwarz K, Squires R, Bezerra J, Shepherd R, Rosenthal P, Hoofnagle JH, Sokol RJ. A multicenter study of the outcome of biliary atresia in the United States, 1997 to 2000. J Pediatr. Apr 2006;148(4):467-474. PMID: 16647406
- Warthen DM, Moore EC, Kamath BM, Morrissette JJ, Sanchez P, Piccoli DA, Krantz ID, Spinner NB. Jagged1 (JAG1) mutations in Alagille syndrome: increasing the mutation detection rate. Hum Mutat. May 2006;27(5):436-443. PMID: 16575836
- McDaniell R, Warthen DM, Sanchez-Lara PA, Pai A, Krantz ID, Piccoli DA, Spinner NB. NOTCH2 mutations cause Alagille syndrome, a heterogeneous disorder of the notch signaling pathway. Am J Hum Genet. Jul 2006;79(1):169-173. PMID: 16773578, PMCID: PMC1474136
- Sokol RJ, Devereaux M, Dahl R, Gumpricht E. "Let there be bile"--understanding hepatic injury in cholestasis. J Pediatr Gastroenterol Nutr. Jul 2006;43 Suppl 1:S4-9. PMID: 16819400
- Setchell KD, Heubi JE. Defects in bile acid biosynthesis--diagnosis and treatment. J Pediatr Gastroenterol Nutr. Jul 2006;43 Suppl 1:S17-22. PMID: 16819396
- Liu C, Aronow BJ, Jegga AG, Wang N, Miethke A, Mourya R, Bezerra JA. Novel resequencing chip customized to diagnose mutations in patients with inherited syndromes of intrahepatic cholestasis. Gastroenterology. Jan 2007;132(1):119-126. PMID: 17241866, PMCID: PMC2190109
- He M, Rutledge SL, Kelly DR, et al. A new genetic disorder in mitochondrial fatty acid betaoxidation: ACAD9 deficiency. Am J Hum Genet. Jul 2007;81(1):87-103. PMID: 17564966, PMCID: PMC1950923
- Heubi JE, Setchell KD, Bove KE. Inborn errors of bile acid metabolism. Semin Liver Dis. Aug 2007;27(3):282-294. PMID: 17682975
- Lee WS, Sokol RJ. Liver disease in mitochondrial disorders. Semin Liver Dis. Aug 2007;27(3):259-273. PMID: 7682973, PMCID: PMC3888320
- Sokol RJ, Shepherd RW, Superina R, Bezerra JA, Robuck P, Hoofnagle JH. Screening and outcomes in biliary atresia: summary of a National Institutes of Health workshop. Hepatology. Aug 2007;46(2):566-581. PMID: 7661405, PMCID: PMC3888317
- DeRusso PA, Ye W, Shepherd R, Haber BA, Shneider BL, Whitington PF, Schwarz KB, Bezerra JA, Rosenthal P, Karpen S, Squires RH, Magee JC, Robuck PR, Sokol RJ. Growth failure and outcomes in infants with biliary atresia: a report from the Biliary Atresia Research Consortium. Hepatology. Nov 2007;46(5):1632-1638. PMID: 17929308, PMCID: PMC3881187
- Sundaram SS, Bove KE, Lovell MA, Sokol RJ. Mechanisms of disease: Inborn errors of bile acid synthesis. Nat Clin Pract Gastroenterol Hepatol. Aug 2008;5(8):456-468. PMID: 8577977, PMCID: PMC3888787
- Pawlikowska L, Strautnieks S, Jankowska I, Czubkowski P, Emerick K, Antoniou A, Wanty C, Fischler B, Jacquemin E, Wali S, Blanchard S, Nielsen IM, Bourke B, McQuaid S, Lacaille F, Byrne JA, van Eerde AM, Kolho KL, Klomp L, Houwen R, Bacchetti P, Lobritto S, Hupertz V, McClean P, Mieli-Vergani G, Shneider B, Nemeth A, Sokal E, Freimer NB, Knisely AS, Rosenthal P, Whitington PF, Pawlowska J, Thompson RJ, Bull LN. Differences in presentation and progression between severe FIC1 and BSEP deficiencies. J Hepatol. Jul 2010;53(1):170-178. PMID: 20447715, PMCID: PMC3042805
Chronic Graft Versus Host Disease Consortium
Conference Proceedings
- Khera N, Xiaoyu C, Duong H, et al. Prospective Longitudinal Study of Late Acute Graft Versus Host Disease after Hematopoietic Cell Transplantation: A Report from Chronic GVHD Consortium. Paper presented at: BMT Tandem Meetings2015; San Diego, CA.
- Palmer J, Chai X, Martin P, et al. Physician-Reported CR+PR at 6 Months Predicts Subsequent Survival in Patients with Chronic GVHD. Paper presented at: BMT Tandem Meetings2015; San Diego, CA.
- Wood W, Lee S, Chai X, et al. Survival without Progressive Impairment As a Novel Endpoint in Chronic Graft-Versus-Host Disease. Paper presented at: BMT Tandem Meetings2015; San Diego, CA.
- Yu J, Storer B, Daguindau E, et al. A Biomarker Panel for Chronic Graft-Versus-Host Disease. Paper presented at: BMT Tandem Meetings2015; San Diego, CA.
Journal Articles
- Chronic Graft Versus Host Disease Consortium. Rationale and design of the chronic GVHD cohort study: improving outcomes assessment in chronic GVHD. Biol Blood Marrow Transplant. Aug 2011;17(8):1114-1120. PMID: 21664473, PMCID: PMC4016312
- Pidala J, Kurland BF, Chai X, Vogelsang G, Weisdorf DJ, Pavletic S, Cutler C, Majhail N, Lee SJ. Sensitivity of changes in chronic graft-versus-host disease activity to changes in patient reported quality of life: results from the Chronic Graft-versus-Host Disease Consortium. Haematologica. Oct 2011;96(10):1528-1535. PMID: 21685473, PMCID: PMC3186315
- Mitchell SA, Jacobsohn D, Thormann Powers KE, et al. A multicenter pilot evaluation of the National Institutes of Health chronic graft-versus-host disease (cGVHD) therapeutic response measures: feasibility, interrater reliability, and minimum detectable change. Biol Blood Marrow Transplant. Nov 2011;17(11):1619-1629. PMID: 21536143, PMCID: PMC3158826
- Pidala J, Vogelsang G, Martin P, Chai X, Storer B, Pavletic S, Weisdorf DJ, Jagasia M, Cutler C, Palmer J, Jacobsohn D, Arai S, Lee SJ. Overlap subtype of chronic graft-versus-host disease is associated with an adverse prognosis, functional impairment, and inferior patient-reported outcomes: a Chronic Graft-versus-Host Disease Consortium study. Haematologica. Mar 2012;97(3):451-458. PMID: 22058206, PMCID: PMC3291602
- Pidala J, Chai X, Martin P, et al. Hand grip strength and 2-minute walk test in chronic graftversus-host disease assessment: analysis from the Chronic GVHD Consortium. Biol Blood Marrow Transplant. Jun 2013;19(6):967-972. PMID: 23542686, PMCID: PMC3966477
- Jacobsohn DA, Kurland BF, Pidala J, et al. Correlation between NIH composite skin score, patient-reported skin score, and outcome: results from the Chronic GVHD Consortium. Blood. Sep 27 2012;120(13):2545-2552; quiz 2774. PMID: 22773386, PMCID: PMC3460679
- Inamoto Y, Martin PJ, Chai X, et al. Clinical benefit of response in chronic graft-versus-host disease. Biol Blood Marrow Transplant. Oct 2012;18(10):1517-1524. PMID: 22683612, PMCID: PMC3443259
- Inamoto Y, Storer BE, Lee SJ, et al. Failure-free survival after second-line systemic treatment of chronic graft-versus-host disease. Blood. Mar 21 2013;121(12):2340-2346. PMID: 23321253, PMCID: PMC3606068
- Arora M, Pidala J, Cutler CS, et al. Impact of prior acute GVHD on chronic GVHD outcomes: a chronic graft versus host disease consortium study. Leukemia. Apr 2013;27(5):1196-1201. PMID: 23047477, PMCID: PMC3942496
- Pidala J, Chai X, Kurland BF, et al. Analysis of gastrointestinal and hepatic chronic grant-versushost disease manifestations on major outcomes: a chronic grant-versus-host disease consortium study. Biol Blood Marrow Transplant. May 2013;19(5):784-791. PMID: 23395601, PMCID: PMC3896215
- Inamoto Y, Storer BE, Petersdorf EW, et al. Incidence, risk factors, and outcomes of sclerosis in patients with chronic graft-versus-host disease. Blood. Jun 20 2013;121(25):5098-5103. PMID: 23547053, PMCID: PMC3689252
- Pidala J, Sarwal M, Roedder S, Lee SJ. Biologic markers of chronic GVHD. Bone Marrow Transplant. Jul 22 2013. PMID: 23872737, PMCID: PMC3976639
- Inamoto Y, Martin PJ, Storer BE, et al. Association of severity of organ involvement with mortality and recurrent malignancy in patients with chronic graft-versus-host disease. Haematologica. 2014;99(10):1618-1623. PMID: 24997150, PMCID: PMC4181259
- Duarte RF, Greinix H, Rabin B, et al. Uptake and use of recommendations for the diagnosis, severity scoring and management of chronic GVHD: an international survey of the EBMT-NCI Chronic GVHD Task Force. Bone Marrow Transplant. Jan 2014;49(1):49-54. PMID: 23955633, PMCID: PMC3947261
- Kitko CL, Levine JE, Storer BE, et al. Plasma CXCL9 elevations correlate with chronic GVHD diagnosis. Blood. Jan 30 2014;123(5):786-793. PMID: 24363401, PMCID: PMC3907763
- Palmer J, Williams K, Inamoto Y, et al. Pulmonary symptoms measured by the national institutes of health lung score predict overall survival, nonrelapse mortality, and patient reported outcomes in chronic graft-versus-host disease. Biol Blood Marrow Transplant. Mar 2014;20(3):337-344. PMID: 24315845, PMCID: PMC3973401
- Allen JL, Tata PV, Fore MS, et al. Increased BCR responsiveness in B cells from patients with chronic GVHD. Blood. Mar 27 2014;123(13):2108-2115. PMID: 24532806, PMCID: PMC3968393
- Inamoto Y, Jagasia M, Wood WA, et al. Investigator feedback about the 2005 NIH diagnostic and scoring criteria for chronic GVHD. Bone Marrow Transplant. Apr 2014;49(4):532-538. PMID: 24464142, PMCID: PMC3975688
- Inamoto Y, Pidala J, Chai X, et al. Assessment of joint and fascia manifestations in chronic graft versus-host disease. Arthritis & rheumatology (Hoboken, NJ). Apr 2014;66(4):1044-1052. PMID: 24757155, PMCID: PMC4014356
- Inamoto Y, Flowers ME, Sandmaier BM, et al. Failure-free survival after initial systemic treatment of chronic graft-versus-host disease. Blood. Aug 21 2014;124(8):1363-1371. PMID: 24876566, PMCID: PMC4141518
- El-Jawahri A, Pidala J, Inamoto Y, et al. Impact of Age on Quality of Life, Functional Status, and Survival in Patients with Chronic Graft-versus-Host Disease. Biol Blood Marrow Transplant. Sep 2014;20(9):1341-1348. PMID: 24813171, PMCID: PMC4127362
- Sun YC, Chai X, Inamoto Y, et al. Impact of Ocular Chronic Graft-versus-Host Disease on Quality of Life. Biol Blood Marrow Transplant. 2015;21(9):1687-1691. PMID: 26033283, PMCID: PMC4537831
- Inamoto Y, Sun YC, Flowers ME, et al. Bandage Soft Contact Lenses for Ocular Graft-versus Host Disease. Biol Blood Marrow Transplant. 2015;21(11):2002-2007. PMID: 26189353, PMCID: PMC4604037
- Krupski C, Jagasia M. Quality of Life in the Chronic GVHD Consortium Cohort: Lessons Learned and the Long Road Ahead. Curr Hematol Malig Rep. Sep 2015;10(3):183-191. PMID: 26303672
- Arai S, Pidala J, Pusic I, et al. A Randomized Phase II Crossover Study of Imatinib or Rituximab for Cutaneous Sclerosis after Hematopoietic Cell Transplantation. Clin Cancer Res. 2016;22(2):319-327. PMID: 26378033, PMCID: PMC4715914
- Cheng GS, Storer B, Chien JW, et al. Lung Function Trajectory in Bronchiolitis Obliterans Syndrome after Allogeneic Hematopoietic Cell Transplant. Annals of the American Thoracic Society. 2016;13(11):1932-1939. PMID: 27513368
- Kariminia A, Holtan SG, Ivison S, et al. Heterogeneity of chronic graft-versus-host disease biomarkers: association with CXCL10 and CXCR3+ NK cells. Blood. 2016;127(24):3082-3091. PMID: 27020088, PMCID: PMC4911864
- Lazaryan A, Weisdorf DJ, DeFor T, et al. Risk Factors for Acute and Chronic Graft-versus-Host Disease after Allogeneic Hematopoietic Cell Transplantation with Umbilical Cord Blood and Matched Sibling Donors. Biol Blood Marrow Transplant. 2016;22(1):134-140. PMID: 26365153, PMCID: PMC4787268
- Liu X, Yue Z, Yu J, et al. Proteomic Characterization Reveals That MMP-3 Correlates With Bronchiolitis Obliterans Syndrome Following Allogeneic Hematopoietic Cell and Lung Transplantation. Am J Transplant. 2016;16(8):2342-2351. PMID: 26887344, PMCID: PMC4956556
- Merkel PA, Manion M, Gopal-Srivastava R, et al. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66. PMID: 27194034, PMCID: PMC4870759
- Merkel EC, Mitchell SA, Lee SJ. Content Validity of the Lee Chronic Graft-versus-Host Disease Symptom Scale as Assessed by Cognitive Interviews. Biol Blood Marrow Transplant. 2016;22(4):752-758. PMID: 26751003, PMCID: PMC4850024
- Muller JA, Zirafi O, Roan NR, Lee SJ, Munch J. Evaluation of EPI-X4 as a urinary peptide biomarker for diagnosis and prognosis of late acute GvHD. Bone Marrow Transplant. 2016;51(8):1137-1139. PMID: 27042833, PMCID: PMC4972659
- Williams KM, Cheng GS, Pusic I, et al. Fluticasone, Azithromycin, and Montelukast Treatment for New-Onset Bronchiolitis Obliterans Syndrome after Hematopoietic Cell Transplantation. Biol Blood Marrow Transplant. 2016;22(4):710-716. PMID: 26475726, PMCID: PMC4801753
- Yu J, Storer BE, Kushekhar K, et al. Biomarker Panel for Chronic Graft-Versus-Host Disease. J Clin Oncol. 2016;34(22):2583-2590. PMID: 27217465, PMCID: PMC5012688
- Palmer J, Chai X, Pidala J, et al. Predictors of survival, non relapse mortality, and failure-free survival in patients treated for chronic graft-versus-host disease. Blood. Jan 7 2016;127(1):160166. PMID: 26527676, PMCID: PMC4705606
- Arora M, Cutler CS, Jagasia MH, et al. Late Acute and Chronic Graft-versus-Host Disease after Allogeneic Hematopoietic Cell Transplantation. Biol Blood Marrow Transplant. Mar 2016;22(3):449-455. PMID: 26541363, PMCID: PMC4787270
- Hamilton BK, Rybicki L, Arai S, et al. Association of Socioeconomic Status with Chronic Graft versus-Host Disease Outcomes. Biol Blood Marrow Transplant. 2017. PMID: 29032275
- Lee SJ. Classification systems for chronic graft-versus-host disease. Blood. 2017;129(1):30-37. PMID: 27821503, PMCID: PMC5216262
- Lee SJ, Nguyen TD, Onstad L, et al. Success of Immunosuppressive Treatments in Patients with Chronic Graft-versus-Host Disease. Biol Blood Marrow Transplant. 2017. PMID: 29133250
- Martin PJ, Storer BE, Inamoto Y, et al. An endpoint associated with clinical benefit after initial treatment of chronic graft-versus-host disease. Blood. 2017;130(3):360-367. PMID: 28495794, PMCID: PMC5520473
- Holtan SG, DeFor TE, Panoskaltsis-Mortari A, et al. Amphiregulin modifies the Minnesota Acute Graft-versus-Host Disease Risk Score: results from BMT CTN 0302/0802. Blood Advances. 2018;2(15):1882-1888. PMID: 30087106, PMCID: PMC6093743
Clinical Research Consortium for Spinocerebellar Ataxias
Book Chapters
- Paulson H. Molecular genetics of the ataxias. In: Watts R, Standaerdt D, Obeso J, eds. Movement Disorders. 3rd ed: McGraw-Hill Professional; 2009.
Abstracts Presented at Conferences
- Figueroa K, Gomez C, Paulson H, Perlman S, Schmahmann J, Subramony SH, Wilmot G, Zesiewicz T, Ashizawa T, Pulst S. Prior Molecular Diagnostic Accuracy and Age of Disease Onset Variation in the CRC−SCA, a Multicenter Study of Spinocerebellar Ataxias. Paper presented at: American Academy of Neurology 64th Annual Meeting; April 21-28, 2012; New Orleans, LA.
- Ashizawa T, Perlman S, Gomez C, Wilmot G, Schmahmann J, Ying S, Zesiewicz T, Paulson H, Shakkottai VG, Bushara K, Mazzoni P, Kuo S, Pulst S, Figueroa K, Xia G, Krischer J, Cuthbertson D, Holbert AR, Ferguson J, Galpern W, Subramony SH. Clinical Characteristics of Spinocerebellar Ataxias 1, 2, 3 and 6. Paper presented at: American Academy of Neurology 64th Annual Meeting; April 21-28, 2012; New Orleans, LA.
Journal Articles
- Thyagarajan B, Bower M, Berger M, Jones S, Dolan M, Wang X. A novel polymorphism in the FMR1 gene: implications for clinical testing of fragile X syndrome. Arch Pathol Lab Med. Jan 2008;132(1):95-98. PMID: 18181681
- Liu T, Xu D, Ashe J, Bushara K. Specificity of inferior olive response to stimulus timing. J Neurophysiol. Sep 2008;100(3):1557-1561. PMID: 18632890, PMCID: PMC2544464
- Williams AJ, Paulson HL. Polyglutamine neurodegeneration: protein misfolding revisited. Trends Neurosci. Oct 2008;31(10):521-528. PMID: 18778858, PMCID: PMC2580745
- Shakkottai VG, Xiao M, Xu L, Wong M, Nerbonne JM, Ornitz DM, Yamada KA. FGF14 regulates the intrinsic excitability of cerebellar Purkinje neurons. Neurobiol Dis. Jan 2009;33(1):81-88. PMID: 18930825, PMCID: PMC2652849
- Todi SV, Winborn BJ, Scaglione KM, Blount JR, Travis SM, Paulson HL. Ubiquitination directly enhances activity of the deubiquitinating enzyme ataxin-3. EMBO J. Feb 18 2009;28(4):372382. PMID: 19153604, PMCID: PMC2646149
- Williams AJ, Knutson TM, Colomer Gould VF, Paulson HL. In vivo suppression of polyglutamine neurotoxicity by C-terminus of Hsp70-interacting protein (CHIP) supports an aggregation model of pathogenesis. Neurobiol Dis. Mar 2009;33(3):342-353. PMID: 19084066, PMCID: PMC2662361
- Paulson HL. The spinocerebellar ataxias. J Neuroophthalmol. Sep 2009;29(3):227-237. PMID: 19726947, PMCID: PMC2739122
- Shakkottai VG, Paulson HL. Physiologic alterations in ataxia: channeling changes into novel therapies. Arch Neurol. Oct 2009;66(10):1196-1201. PMID: 19822774, PMCID: PMC2762109
- D'Abreu A, Franca MC, Jr., Paulson HL, Lopes-Cendes I. Caring for Machado-Joseph disease: current understanding and how to help patients. Parkinsonism Relat Disord. Jan 2010;16(1):2-7. PMID: 19811945, PMCID: PMC2818316
- Todd PK, Paulson HL. RNA-mediated neurodegeneration in repeat expansion disorders. Ann Neurol. Mar 2010;67(3):291-300. PMID: 20373340, PMCID: PMC2852186
- Elrick MJ, Pacheco CD, Yu T, Dadgar N, Shakkottai VG, Ware C, Paulson HL, Lieberman AP. Conditional Niemann-Pick C mice demonstrate cell autonomous Purkinje cell neurodegeneration. Hum Mol Genet. Mar 1 2010;19(5):837-847. PMID: 20007718, PMCID: PMC2816612
- Oz G, Nelson CD, Koski DM, Henry PG, Marjanska M, Deelchand DK, Shanley R, Eberly LE, Orr HT, Clark HB. Noninvasive detection of presymptomatic and progressive neurodegeneration in a mouse model of spinocerebellar ataxia type 1. J Neurosci. Mar 10 2010;30(10):3831-3838. PMID: 20220018, PMCID: PMC2846771
- Friedman LS, Farmer JM, Perlman S, Wilmot G, Gomez CM, Bushara KO, Mathews KD, Subramony SH, Ashizawa T, Balcer LJ, Wilson RB, Lynch DR. Measuring the rate of progression in Friedreich ataxia: implications for clinical trial design. Mov Disord. Mar 15 2010;25(4):426432. PMID: 20063431, PMCID: PMC2954653
- Oz G, Hutter D, Tkac I, Clark HB, Gross MD, Jiang H, Eberly LE, Bushara KO, Gomez CM. Neurochemical alterations in spinocerebellar ataxia type 1 and their correlations with clinical status. Mov Disord. Jul 15 2010;25(9):1253-1261. PMID: 20310029, PMCID: PMC2916651
- Iltis I, Hutter D, Bushara KO, Clark HB, Gross M, Eberly LE, Gomez CM, Oz G. (1)H MR spectroscopy in Friedreich's ataxia and ataxia with oculomotor apraxia type 2. Brain Res. Oct. 28 2010;1358:200-210. PMID: 20713024, PMCID: PMC2949538
- Wu X, Nestrasil I, Ashe J, Tuite P, Bushara K. Inferior olive response to passive tactile and visual stimulation with variable interstimulus intervals. Cerebellum. Dec 2010;9(4):598-602. PMID: 20730634
- Teive HA, Munhoz RP, Raskin S, Arruda WO, de Paola L, Werneck LC, Ashizawa T. Spinocerebellar ataxia type 10: Frequency of epilepsy in a large sample of Brazilian patients. Mov Disord. Dec 15 2010;25(16):2875-2878. PMID: 20818609, PMCID: PMC3000879
- Scharner J, Brown CA, Bower M, Iannaccone ST, Khatri IA, Escolar D, Gordon E, Felice K, Crowe CA, Grosmann C, Meriggioli MN, Asamoah A, Gordon O, Gnocchi VF, Ellis JA, Mendell JR, Zammit PS. Novel LMNA mutations in patients with Emery-Dreifuss muscular dystrophy and functional characterization of four LMNA mutations. Hum Mutat. Feb 2011;32(2):152-167. PMID: 20848652
- Oz G, Tkac I. Short-echo, single-shot, full-intensity proton magnetic resonance spectroscopy for neurochemical profiling at 4 T: validation in the cerebellum and brainstem. Magn Reson Med. Apr 2011;65(4):901-910. PMID: 21413056, PMCID: PMC3827699
- Oz G, Iltis I, Hutter D, Thomas W, Bushara KO, Gomez CM. Distinct neurochemical profiles of spinocerebellar ataxias 1, 2, 6, and cerebellar multiple system atrophy. Cerebellum. Jun 2011;10(2):208-217. PMID: 20838948, PMCID: PMC3089811
- Bower MA, Bushara K, Dempsey MA, Das S, Tuite PJ. Novel mutations in siblings with lateronset PLA2G6-associated neurodegeneration (PLAN). Mov Disord. Aug 1 2011;26(9):17681769. PMID: 21520282
- Moscovich M, Munhoz RP, Teive HA, Raskin S, Carvalho Mde J, Barbosa ER, Ranvaud R, Liu J, McFarland K, Ashizawa T, Lees AJ, Silveira-Moriyama L. Olfactory impairment in familial ataxias. J Neurol Neurosurg Psychiatry. Oct 2012;83(10):970-974. PMID: 22791905, PMCID: PMC3521149
- Xia G, Santostefano KE, Goodwin M, Liu J, Subramony SH, Swanson MS, Terada N, Ashizawa T. Generation of neural cells from DM1 induced pluripotent stem cells as cellular model for the study of central nervous system neuropathogenesis. Cellular Reprogramming. Apr 2013;15(2):166-177. PMID: 23550732, PMCID: PMC3616452
- Ashizawa T, Figueroa KP, Perlman SL, et al. Clinical characteristics of patients with spinocerebellar ataxias 1, 2, 3 and 6 in the US; a prospective observational study. Orphanet J Rare Dis. Nov 13 2013;8(1):177. PMID: 24225362, PMCID: PMC3843578
Consortium for Clinical Investigation of Neurologic Channelopathies
Abstracts Presented at Conferences
- Herr B, Malloy J, Cleland J, Krischer J. Automated tools for data collection and management in clinical research studies of Andersen-Tawil syndrome: improving protocol compliance and data quality. Paper presented at: Inventory and Evaluation of Clinical Research Networks; May 31, 2006; Washington, DC.
- Herr B, Richesson R, Krischer J, Griggs RC, Consortium tC. A research network for the experimental therapeutics of rare neurologic disorders. Paper presented at: 9th Annual Meeting of the American Society for Experimental NeuroTherapeutics (ASENT); March 8-10, 2007; Washington, DC.
- Walsh R, Statland J, Wang Y, Bundy B, Barohn RJ, group tCs. The nondystrophic myotonias: genotype-phenotype correlation and longitudinal study. Clinical phenotype characterization. Paper presented at: 59th American Academy of Neurology Meeting,; April 28-May 5, 2007; Boston, MA.
- Wang Y, Statland J, Walsh R, Barohn RJ, Group CS. Interactive voice response diary and objective myotonia measurement as endpoints for clinical trials in nondystrophic myotonia. Paper presented at: 59th American Academy of Neurology Meeting; April 28-May 5, 2007; Boston, MA.
- Trivedi J, Statland J, Cannon S, Bundy B, Wang Y, Barohn R. Nondystrophic myotonic disorders: assessment of myotonia and warm-up phenomenon in various subtypes. Paper presented at: American Academy of Neurology; April 12-19, 2008; Chicago, IL.
- Venance SL, LaDonna KA, Matthews E, Y W, B B, Barohn R. Nondystrophic myotonias: measuring quality of life in a longitudinal natural history study. Neurology. 2009;72(Supplement 3).
- Cialfoni E, Rajakuledran S, Sansone V, Trivedi J, Venance S, Tristani-Firouzi M, Bundy B, Hart K, Meola G, Griggs R, CINCH Consortium. Preliminary results of Andersen-Tawil Syndrome genotype-phenotype longitudinal study from the Consortium for Clinical Investigation of Neurologic Channelopathies (CINCH). Paper presented at: World Congress of Neurology; November 12-17, 2011; Marrakesh, Morocco.
- Graves T, Cha Y, Hahn A, Barohn RJ, Amato A, Griggs R, Bundy B, Jen JC, Baloh R, Hanna M. Episodic ataxia type 1: Characterization of the disease and its effect on quality of life. Paper presented at: American Academy of Neurology; April 21-28, 2012; New Orleans.
- Graves T, Fialho D, Smith S, Cha Y, Amato A, Griggs R, Bundy B, Jen JC, Baloh R, Hanna M. EEG abnormalities in the episodic ataxias. Paper presented at: American Academy of Neurology; April 21-28, 2012; New Orleans, LA.
- Trivedi J, Bundy B, Rayan DR, Salajegheh M, Statland JM, Venance S, Wang Y, Fialho D, Hart K, Gorham N, Herbelin L, Amato A, Hanna M, Griggs R, Barohn RJ. Clinical and molecular characterization of non-dystrophic myotonia. Paper presented at: American Academy of Neurology; April 25, 2012; New Orleans, LA.
- Statland JM, Salajegheh M, Bundy B, Wang Y, Rayan DR, Trivedi J, Sansone V, Venance S, Cialfoni E, Matthews E, Meola G, Zanolini A, Ciocca M, Herbelin L, Griggs R, Barohn RJ, Hanna M, CINCH Consortium. Phase II therapeutic trial of Mexiletine in non-dystrophic myotonia: secondary outcomes show improvement in symptoms and signs of myotonia. Paper presented at: American Academy of Neurology; April 26, 2012; New Orleans, LA.
Journal Articles
- Jen J, Kim GW, Baloh RW. Clinical spectrum of episodic ataxia type 2. Neurology. Jan 13 2004;62(1):17-22. PMID: 14718690
- Venance SL, Herr BE, Griggs RC. Challenges in the design and conduct of therapeutic trials in channel disorders. Neurotherapeutics. Apr 2007;4(2):199-204. PMID: 17395129
- Cha YH, Baloh RW. Migraine associated vertigo. J Clin Neurol. Sep 2007;3(3):121-126. PMID: 19513278, PMCID: PMC2686840
- Jen JC, Graves TD, Hess EJ, Hanna MG, Griggs RC, Baloh RW. Primary episodic ataxias: diagnosis, pathogenesis and treatment. Brain. Oct 2007;130(Pt 10):2484-2493. PMID: 17575281
- Craig K, Elliott HR, Keers SM, Lambert C, Pyle A, Graves TD, Woodward C, Sweeney MG, Davis MB, Hanna MG, Chinnery PF. Episodic ataxia and hemiplegia caused by the 8993T->C mitochondrial DNA mutation. J Med Genet. Dec 2007;44(12):797-799. PMID: 18055910, PMCID: PMC2652821
- Jen JC. Recent advances in the genetics of recurrent vertigo and vestibulopathy. Curr Opin Neurol. Feb 2008;21(1):3-7. PMID: 18180645
- Jen JC. Hereditary episodic ataxias. Ann NY Acad Sci. Oct 2008;1142:250-253. PMID: 18990130
- Fialho D, Kullmann DM, Hanna MG, Schorge S. Non-genomic effects of sex hormones on CLC-1 may contribute to gender differences in myotonia congenita. Neuromuscul. Disord. Nov 2008;18(11):869-872. PMID: 18815035
- Griggs RC, Batshaw M, Dunkle M, Gopal-Srivastava R, Kaye E, Krischer J, Nguyen T, Paulus K, Merkel PA. Clinical research for rare disease: opportunities, challenges, and solutions. Mol Genet Metab. Jan 2009;96(1):20-26. PMID: 19013090, PMCID: PMC3134795
- de Vries B, Mamsa H, Stam AH, Wan J, Bakker SL, Vanmolkot KR, Haan J, Terwindt GM, Boon EM, Howard BD, Frants RR, Baloh RW, Ferrari MD, Jen JC, van den Maagdenberg AM. Episodic ataxia associated with EAAT1 mutation C186S affecting glutamate reuptake. Arch Neurol. Jan 2009;66(1):97-101. PMID: 19139306
- Meola G, Hanna MG, Fontaine B. Diagnosis and new treatment in muscle channelopathies. J Neurol Neurosurg Psychiatry. Apr 2009;80(4):360-365. PMID: 19289476
- Cha YH, Lee H, Santell LS, Baloh RW. Association of benign recurrent vertigo and migraine in 208 patients. Cephalalgia. May 2009;29(5):550-555. PMID: 19170697, PMCID: PMC2820365
- Jen JC, Baloh RW. Familial episodic ataxia: a model for migrainous vertigo. Ann NY Acad Sci. May 2009;1164:252-256. PMID: 19645908
- Matthews E, Labrum R, Sweeney MG, Sud R, Haworth A, Chinnery PF, Meola G, Schorge S, Kullmann DM, Davis MB, Hanna MG. Voltage sensor charge loss accounts for most cases of hypokalemic periodic paralysis. Neurology. May 5 2009;72(18):1544-1547. PMID: 19118277, PMCID: PMC2848101
- Rajakulendran S, Tan SV, Matthews E, Tomlinson SE, Labrum R, Sud R, Kullmann DM, Schorge S, Hanna MG. A patient with episodic ataxia and paramyotonia congenita due to mutations in KCNA1 and SCN4A. Neurology. Sep 22 2009;73(12):993-995. PMID: 19770477, PMCID: PMC2754337
- Tomlinson SE, Hanna MG, Kullmann DM, Tan SV, Burke D. Clinical neurophysiology of the episodic ataxias: insights into ion channel dysfunction in vivo. Clin Neurophysiol. Oct 2009;120(10):1768-1776. PMID: 19734086
- Platt D, Griggs R. Skeletal muscle channelopathies: new insights into the periodic paralyses and nondystrophic myotonias. Curr Opin Neurol. Oct 2009;22(5):524-531. PMID: 19571750, PMCID: PMC2763141
- Cha YH. Mal de debarquement. Semin Neurol. Nov 2009;29(5):520-527. PMID: 19834863, PMCID: PMC2846419
- Matthews E, Fialho D, Tan SV, Venance SL, Cannon SC, Sternberg D, Fontaine B, Amato AA, Barohn RJ, Griggs RC, Hanna MG. The non-dystrophic myotonias: molecular pathogenesis, diagnosis and treatment. Brain. Jan 2010;133(Pt 1):9-22. PMID: 19917643, PMCID: PMC2801326
- Ryan DP, da Silva MR, Soong TW, Fontaine B, Donaldson MR, Kung AW, Jongjaroenprasert W, Liang MC, Khoo DH, Cheah JS, Ho SC, Bernstein HS, Maciel RM, Brown RH, Jr., Ptacek LJ. Mutations in potassium channel Kir2.6 cause susceptibility to thyrotoxic hypokalemic periodic paralysis. Cell. Jan 8 2010;140(1):88-98. PMID: 20074522, PMCID: PMC2885139
- Zhou H, Lillis S, Loy RE, Ghassemi F, Rose MR, Norwood F, Mills K, Al-Sarraj S, Lane RJ, Feng L, Matthews E, Sewry CA, Abbs S, Buk S, Hanna M, Treves S, Dirksen RT, Meissner G, Muntoni F, Jungbluth H. Multi-minicore disease and atypical periodic paralysis associated with novel mutations in the skeletal muscle ryanodine receptor (RYR1) gene. Neuromuscul Disord. Mar 2010;20(3):166-173. PMID: 20074522, PMCID: PMC2885139
- Cha YH. Migraine-associated vertigo: diagnosis and treatment. Semin Neurol. Apr 2010;30(2):167-174. PMID: 20352586
- Rajakulendran S, Graves TD, Labrum RW, Kotzadimitriou D, Eunson L, Davis MB, Davies R, Wood NW, Kullmann DM, Hanna MG, Schorge S. Genetic and functional characterisation of the P/Q calcium channel in episodic ataxia with epilepsy. J Physiol. Jun 1 2010;588(Pt 11):19051913. PMID: 20156848, PMCID: PMC2901979
- Matthews E, Hanna MG. Muscle channelopathies: does the predicted channel gating pore offer new treatment insights for hypokalaemic periodic paralysis? J Physiol. Jun 1 2010;588(Pt 11):1879-1886. PMID: 20123788, PMCID: PMC2901976
- Hess EJ, Jen JC, Jinnah HA, Benarroch EE. Neuronal voltage-gated calcium channels: brief overview of their function and clinical implications in neurology. Neurology. Sep 7 2010;75(10):937; author reply 937-938. PMID: 20820007
- Tomlinson SE, Tan SV, Kullmann DM, Griggs RC, Burke D, Hanna MG, Bostock H. Nerve excitability studies characterize Kv1.1 fast potassium channel dysfunction in patients with episodic ataxia type 1. Brain. Dec 2010;133(Pt 12):3530-3540. PMID: 21106501, PMCID: PMC2995887
- Griggs RC. The AAN disciplinary process: indispensable to neurologists. Neurology. Dec 14 2010;75(24):2148-2149. PMID: 21084691
- Statland JM, Wang Y, Richesson R, Bundy B, Herbelin L, Gomes J, Trivedi J, Venance S, Amato A, Hanna M, Griggs R, Barohn RJ, The CINCH Consortium. An interactive voice response diary for patients with non-dystrophic myotonia. Muscle Nerve. 2011;44(1):30-35. PMID: 21674518, PMCID: PMC3233757
- Tan SV, Matthews E, Barber M, Burge JA, Rajakulendran S, Fialho D, Sud R, Haworth A, Koltzenburg M, Hanna MG. Refined exercise testing can aid DNA-based diagnosis in muscle channelopathies. Ann Neurol. Feb 2011;69(2):328-340. PMID: 21387378, PMCID: PMC3051421
- Matthews E, Miller JA, MacLeod MR, Ironside J, Ambler G, Labrum R, Sud R, Holton JL, Hanna MG. Sodium and chloride channelopathies with myositis: coincidence or connection? Muscle Nerve. Aug 2011;44(2):283-288. PMID: 21698652, PMCID: PMC3136616
- Matthews E, Portaro S, Ke Q, Sud R, Haworth A, Davis MB, Griggs RC, Hanna MG. Acetazolamide efficacy in hypokalemic periodic paralysis and the predictive role of genotype. Neurology. Nov 29 2011;77(22):1960-1964. PMID: 22094484, PMCID: PMC3235354
- Platt D, Griggs RC. Use of acetazolamide in sulfonamide-allergic patients with neurologic channelopathies. Arch Neurol. Apr 2012;69(4):527-529. PMID: 22158718, PMCID: PMC3785308
- Raja Rayan DL, Haworth A, Sud R, Matthews E, Fialho D, Burge J, Portaro S, Schorge S, Tuin K, Lunt P, McEntagart M, Toscano A, Davis MB, Hanna MG. A new explanation for recessive myotonia congenita: exon deletions and duplications in CLCN1. Neurology. Jun 12 2012;78(24):1953-1958. PMID: 22649220, PMCID: PMC3369509
- Tan SV, Z'Graggen W J, Boerio D, Rayan DL, Howard R, Hanna MG, Bostock H. Membrane dysfunction in Andersen-Tawil syndrome assessed by velocity recovery cycles. Muscle Nerve. Aug 2012;46(2):193-203. PMID: 22806368
- Murphy SM, Puwanant A, Griggs RC. Unintended effects of orphan product designation for rare neurological diseases. Ann Neurol. Oct 2012;72(4):481-490. PMID: 23109143, PMCID: PMC3490440
- Statland JM, Bundy BN, Wang Y, Trivedi JR, Raja Rayan D, Herbelin L, Donlan M, McLin R, Eichinger KJ, Findlater K, Dewar L, Pandya S, Martens WB, Venance SL, Matthews E, Amato AA, Hanna MG, Griggs RC, Barohn RJ. A quantitative measure of handgrip myotonia in nondystrophic myotonia. Muscle Nerve. Oct 2012;46(4):482-489. PMID: 22987687, PMCID: PMC3564214
- Statland JM, Bundy BN, Wang Y, Rayan DR, Trivedi JR, Sansone VA, Salajegheh MK, Venance SL, Ciafaloni E, Matthews E, Meola G, Herbelin L, Griggs RC, Barohn RJ, Hanna MG. Mexiletine for symptoms and signs of myotonia in nondystrophic myotonia: a randomized controlled trial. JAMA. Oct 3 2012;308(13):1357-1365. PMID: 23032552, PMCID: PMC3564227
- Ke Q, Luo B, Qi M, Du Y, Wu W. Gender differences in penetrance and phenotype in hypokalemic periodic paralysis. Muscle Nerve. Jan 2013;47(1):41-45. PMID: 23019082
- Trivedi JR, Bundy B, Statland J, et al. Non-dystrophic myotonia: prospective study of objective and patient reported outcomes. Brain. Jul 2013;136(Pt 7):2189-2200. PMID: 23771340, PMCID: PMC3692030
Rare Genetic Steroid Disorders
Journal Articles
- Ergun-Longmire B, Auchus R, Papari-Zareei M, Tansil S, Wilson RC, New MI. Two novel mutations found in a patient with 17alpha-hydroxylase enzyme deficiency. J Clin Endocrinol Metab. Oct 2006;91(10):4179-4182. PMID: 16849412
- New MI. Extensive clinical experience: nonclassical 21-hydroxylase deficiency. J Clin Endocrinol Metab. Nov 2006;91(11):4205-4214. PMID: 16912124
- Nimkarn S, Lin-Su K, Berglind N, Wilson RC, New MI. Aldosterone-to-renin ratio as a marker for disease severity in 21-hydroxylase deficiency congenital adrenal hyperplasia. J Clin Endocrinol Metab. Jan 2007;92(1):137-142. PMID: 17032723
- Wilson RC, Nimkarn S, Dumic M, Obeid J, Azar MR, Najmabadi H, Saffari F, New MI. Ethnic specific distribution of mutations in 716 patients with congenital adrenal hyperplasia owing to 21-hydroxylase deficiency. Mol Genet Metab. Apr 2007;90(4):414-421. PMID: 17275379, PMCID: PMC1885892
- Meyer-Bahlburg HF, Dolezal C. The female sexual function index: a methodological critique and suggestions for improvement. J Sex Marital Ther. May-Jun 2007;33(3):217-224. PMID: 17454519
- Meyer-Bahlburg HF, Dolezal C, Baker SW, New MI. Sexual orientation in women with classical or non-classical congenital adrenal hyperplasia as a function of degree of prenatal androgen excess. Arch Sex Behav. Feb 2008;37(1):85-99. PMID: 18157628
Rare Kidney Stone Consortium
Book Chapters
- Edvardsson VO, Palsson R, Sahota A. Adenine Phosphoribosyltransferase Deficiency. In: Pagon RA, Bird TD, Dolan CR, Stephens K, Adam MP, eds. GeneReviews. Seattle WA: University of Washington, Seattle; 1993. PMID: 22934314
- Lieske JC, Milliner DS, Beara-Lasic L, Rossetti S. Dent Disease. In: Pagon RA, Bird TD, Dolan CR, Stephens K, Adam MP, eds. GeneReviews. Seattle WA: University of Washington, Seattle; 1993. PMID: 22876375
Abstracts Presented at Conferences
- Edvardsson V, Gudbjartsson D, Indridason O, et al. Sequence Variants at the UMOD Gene Associate with Risk of Kidney Stone Disease. American Society of Nephrology Kidney Week. San Diego, CA 2009.
- Edvardsson V, Palsson R, Indridason O, Thorvaldsson S, Stefansson K. Familial Clustering of Kidney Stone Disease in Iceland. Biennial Meeting of The Nordic Society of Nephrology. Helsinki, Finland 2009.
- Indridason O, Gudbjartsson D, Edvardsson V, et al. The Association Between Chronic Kidney Disease and Sequence Variants in the UMOD Gene is Highly Dependent on Age. American Society of Nephrology Kidney Week. San Diego, CA 2009.
- Milliner D, Monico C, Bergstralh E, Lieske J. Urine oxalate variability in primary hyperoxaluria. American Society of Nephrology Kidney Week. San Diego, CA 2009.
- Monico C, Olson J, Bergstralh E, Heilman R, Milliner D. Effect of betaine on urine oxalate in primary hyperoxaluria, type I. American Society of Nephrology (ASN) Kidney Week. Philadelphia, PA 2011.
- Lieske J. How do kidney stones start? Paper presented at: Second International Istanbul Urolithiasis Days. February, 2011; Istanbul, Turkey.
- Lieske J. What can epidemiology teach us regarding the pathogenesis and consequences of kidney stones? Paper presented at: Second International Istanbul Urolithiasis Days; February, 2011; Istanbul, Turkey.
- Milliner D. Hyperoxaluria: an update. Paper presented at: Pediatric Nephrology Seminar XXXVIII; March, 2011; Miami Beach, Florida.
- Lewis M, Sahota A, Ward MD, Goldfarb DS, Holmes E, Want EJ. Characterization of small molecule aggregate components in cystine stones as a screen for candidate stone inhibitors. Paper presented at: American Society for Mass Spectrometry; June, 2011; Denver, CO.
- Milliner D. Effects of betaine as molecular chaperone in primary hyperoxaluria, type I. Paper presented at: Research on Calculus Kinetics Society; September, 2011; Boston, Massachusetts.
- Langman C, Vural G, Brooks E. Proteomics in genetic kidney stone disease. Paper presented at: 44th Annual Scientific Meeting of European Society of Paediatric Nephrology (ESPN); September 14-17, 2011; Dubrovnik, Croatia.
- Goldfarb D. Update on cystinuria: registry and new theraputic approaches. Paper presented at: Council of Pediatric Nephrology and Urology Meeting; October, 2011; New York.
- Sahota A, Yang M, Shikhel S, Kathuria N, Lewis M, Ward MD, Goldfarb DS, Tischfield JA. A new pharmacologic approach for cystinuria. Paper presented at: American Society for Human Genetics; October, 2011; Montreal, Canada.
- Sahota A, Yang M, Shikhel S, Lewis M, Goldfarb DS, Ward MD, Tischfield JA. Tailored inhibition of cystine stone formation as a therapy for cystinuria. Paper presented at: Society for the Study of Inborn Errors of Metabolism (SSIEM); November, 2011; United Kingdom.
- Sigurdsson B, Thorsteinsdottir M, Eiriksson FF, Edvardsson VO, Palsson R. Rapid method for determination of urinary 2,8-dihydroxyadenine concentration with by UPLC-MS/MS. Paper presented at: Annual Meeting of the European Bioanalysis Forum; November, 2011; Barcelona, Spain.
- Mattoo A, Modersitzki F, Asplin J, Cohen BH, Grasso M, Goldfarb DS. Clinical validation of a novel assay used for monitoring treatment of patients with cystinuria. Paper presented at: Annual meeting of the American Society of Nephrology; November, 2011; Philadelphia, PA.
- Chopra B, Amer H, Rodrigo E, Lieske J. Oxalosis after kidney transplantation in bariatric surgery patients: a retrospective analysis. American Society of Nephrology (ASN) Kidney Week. San Diego, CA2012.
- Edvardsson V. Clinical features and long-term renal outcome in Icelandic patients with APRT deficiency and 2,8-dihydroxyadeninuria. The 11th Congress of the European Society of Internal Medicine. Madrid, Spain 2012.
- Eirin A, Irazabal M, Lieske J, Nasr S, Sethi S, Fervenza F. Dent's Disease Presenting as Global Glomerulosclerosis. American Society of Nephrology (ASN) Kidney Week. San Diego, CA 2012.
- Lieske J. Kidney Stones 2012 Overview/ Summary. American Society of Nephrology Kidney Week. San Diego, CA 2012.
- Lieske J. Primary Hyperoxaluria: not such a rare disease? Research on Calculous Kinetics Society Session at the American Urological Association Meeting. Atlanta, GA 2012.
- Lieske J, Bergstralh E, Mehta R, Langman C, Milliner D. Determinants and outcome of renal calcification in primary hyperoxaluria. American Society of Nephrology (ASN) Kidney Week. San Diego 2012.
- Runolfsdottir H, Palsson R, Agustsdottir I, Edvardsson V. Clinical Features and Long-Term Renal Outcome in Icelandic Patients with APRT Deficiency and 2,8-Dihydroxyadeninuria. American Society of Nephrology (ASN) Kidney Week. San Diego, CA 2012.
- Edvardsson V. Rare causes of kidney stones and kidney failure: focus on APRT deficiency and 2, 8-dihydroxyadeninuria. Paper presented at: Symposium on Rare Disease, Annual Meeting of the Icelandic Medical Association; January, 2012; Reykjavic, Iceland.
- Lieske J. Stones from the inside out: what every urologist sees but few nephrologists know about. Paper presented at: Hong Kong Society of Nephrology, Renal Commissioned Training; January, 2012; Hong Kong, People's Republic of China.
- Goldfarb D. Cysinturia. Paper presented at: 12th International Symposium on Urolithiasis; May, 2012; Ouro Preto, Brazil.
- Lieske J. Hypertension and Urolithiasis. Paper presented at: 12th International Symposium on Urolithiasis; May, 2012; Ouro Preto, Brazil.
- Edvardsson VO, Sigurdsson B, Thorsteinsdottir M, Palsson R. Rapid determination of urinary 2,8-dihydroxyadenine with liquid chromatography - electrospray tandem mass spectrometry for monitoring of drug treatment. Paper presented at: The 49th Annual ERA-EDTA Congress; May, 2012; Paris, France.
- Cohen J, Goldfarb DS, Grasso M. Management of cystinuric patients in a dedicated stone clinic decreases stone events. Paper presented at: Annual Meeting of the American Urological Association; May, 2012; Atlanta, GA.
- Cohen J, Mattoo A, Modersitzki F, Asplin J, Goldfarb DS, Grasso M. Clinical validation of a novel assay used for monitoring treatment of patients with cystinuria. Paper presented at: Annual Meeting of the American Urological Association; May, 2012; Atlanta, GA.
- Tosetto E, Casarin A, Cristofaro R, Salviati L, Anglani F. The complexity of the 5’UTR region of CLCN5 gene: ten 5’UTR ends are differentially expressed in the human kidney. Paper presented at: 49th ERA-EDTA Congress; May, 2012; Paris, France.
- Thorsteinsdottir M, Sigurdsson B, Edvardsson VO, Palsson R. Chemometric optimization of UPLC-MS/MS assay for rapid determination of urinary 2,8-dihydroxyadenine for therapeutic drug monitoring of APRT deficient patients. Paper presented at: The 60th ASMS Conference on Mass Spectrometry and Allied Topics; May 2012, 2012; Vancouver, BC, Canada.
- Lieske J. Primary hyperoxaluria: not such a rare disease? Paper presented at: Research on Calculous Kinetics Society Session at the American Urological Association Meeting; May, May 2012; Atlanta, GA.
- Edvardsson VO, Hardarson S, Palsson R. Renal histopathological findings in patients with 2, 8Dihydroxyadeninuria. Paper presented at: 49th Annual ERA-EDTA Congress; May 24-27, 2012; Paris, France.
- Milliner D. Future treatment options/studies. Paper presented at: 10th International Primary Hyperoxaluria Workshop; June, 2012; Bonn, Germany.
- Thorsteinsdottir M, Sigurdsson B, Eririksson F, Edvardsson VO, Palsson R. Rapid determination of urinary 2,8-dihydroxyadenine by UPLC-MS/MS for therapeutic drug monitoring of APRT deficient patients. Paper presented at: The XXXIII Meeting of the Nordic Society for Clinical Chemistry; June, 2012; Reykjavik, Iceland.
- Khoul S, Khandrika L, Meacham R, Olson J, Lieske JC, Milliner D. Culture of hepatocytes from primary hyperoxaluria type I liver. Paper presented at: 10th International Primary Hyperoxaluria Workshop; June, 2012; Bonn, Germany.
- Knight J, Riedel TJ, Lowther WT, Holmes RP. Measurement of 4-hydroxy-2-oxoglutarate in urine, liver and sera from primary hyperoxaluria type 3 patients. Paper presented at: 10th International Primary Hyperoxaluria Workshop; June, 2012; Bonn, Germany.
- Lorenz E, Dyck PJ, Tracy J, Milliner D. Progressive demyelinating polyradiculoneuropathy due to intraneural oxalate deposition in two patients with type I primary hyperoxaluria (PHI). Paper presented at: 10th International Primary Hyperoxaluria Workshop; June, 2012; Bonn, Germany.
- Cornell LD, Pamidi N, Nasr SH, Milliner D. Features of recurrent oxalosis in the renal allograft. Paper presented at: 10th International Primary Hyperoxaluria Workshop; June, 2012; Bonn, Germany.
- Edvardsson V. APRT deficiency and dihydroxyadeninuria: an underrecognized cause of kidney stones and CKD. Paper presented at: Annual Meeting of the ROCK Society; September, 2012; Indianapolis, Indiana.
- Milliner D. Crystal nephropathies and chameleons. Paper presented at: 8th Uruguayan Congress of Nephrology; September, 2012; Montevideo, Uruguay.
- Milliner D. Kids and stones and bones. Paper presented at: 8th Uruguyan Congress of Nephrology; September, 2012; Montevideo, Uruguay.
- Edvardsson VO, Hardarson S, Palsson R. Renal histopathological findings in patients with 2,8 dihydroxyadeninuria. Paper presented at: European Society For Pediatric Nephrology; September, 2012; Krakow, Poland.
- Edvardsson V, Agustsdottir I, Palsson R. Childhood presentation and renal outcome of APRT deficiency (2,8-Dihydroxyadeninuria) in Iceland. Paper presented at: European Society For Pediatric Nephrology, 45th Annual Meeting; September, 2012; Krakow, Poland.
- Thorsteinsdottir M, Bragi Sigurdsson B, Eiriksson FF, Edvardsson VO, Palsson R. Chemometric optimization of UPLC-MS/MS assay for evaluation of rare causes of kidney stones and kidney failure. Paper presented at: Waters 3rd Nordic MS Symposium; Sept 11-12, 2012; Jurmala, Latvia.
- Edvardsson V. Clincal features and long-term renal outcome of Islandic patients with APRT deficiency and 2,8-dihydroxyadeninuria. Paper presented at: 11th Congress of the European Society of Internal Medicine; October, 2012; Madrid, Spain.
- Runolfsdottir H, Edvardsson VO, Hardarson S, Palsson R. Renal histopathological findings in patients with 2,8-dihydroxyadeninuria. Paper presented at: The 11th Congress of the European Society of Internal Medicine; October, 2012; Madrid, Spain.
- Edvardsson VO, Runolfsdottir H, Agustsdottir I, Palsson R. Long-term renal outcome in patients with APRT deficiency and 2,8-dihydroxyadeninuria. Paper presented at: Annual Meeting of The American Society of Nephrology; November, 2012; San Diego, CA.
- Edvardsson V. APRT deficiency. Nordic Society of Nephrology 32nd Biennial Congress. Reykjavik, Iceland 2013.
- Lieske J. Bariatric Surgery and Nephrolithiasis. Nephrolithiasis: a systemic disorder. Rome, Italy 2013.
- Lieske J. Dent Disease. Nordic Society of Nephrology 32nd Biennial Congress. Reykjavik, Iceland 2013.
- Milliner D. Primary Hyperoxlauria. Nordic Society of Nephrology 32nd Biennial Congress. Reykjavik, Iceland 2013.
- Thorsteinsdottir M. Quantification of Purine Biomarkers by UPLC-MS/MS for Clinical Diagnostic of Rare Kidney Stones and Kidney Failure. 61st ASMS Conference on Mass Spectrometry. Minneapolis, MN 2013.
Journal Articles
- Hoppe B, Beck BB, Milliner DS. The primary hyperoxalurias. Kidney Int. Jun 2009;75(12):12641271. PMID: 19225556, PMCID: PMC4577278
- Mookadam F, Kheir ME, Alharthi M, Moustafa S, Kazmier FJ, McBain R, Mookadam M, Tajik J, Milliner DS. Vascular Involvement in Primary Hyperoxalosis: An Evidence Based Sytematic Overview Over a Fifty Year Span. Nephro Urol Mon. 2010;02(03):390-396.
- Nasr SH, Sethi S, Cornell LD, Milliner DS, Boelkins M, Broviac J, Fidler ME. Crystalline nephropathy due to 2,8-dihydroxyadeninuria: an under-recognized cause of irreversible renal failure. Nephrol Dial Transplant. Jun 2010;25(6):1909-1915. PMID: 0064951
- Chillaron J, Font-Llitjos M, Fort J, Zorzano A, Goldfarb DS, Nunes V, Palacin M. Pathophysiology and treatment of cystinuria. Nature reviews. Nephrology. Jul 2010;6(7):424-434. PMID: 20517292
- Belostotsky R, Seboun E, Idelson GH, Milliner DS, Becker-Cohen R, Rinat C, Monico CG, Feinstein S, Ben-Shalom E, Magen D, Weissman I, Charon C, Frishberg Y. Mutations in DHDPSL are responsible for primary hyperoxaluria type III. Am J Hum Genet. Sep 10 2010;87(3):392399. PMID: 20797690, PMCID: PMC2933339
- Rimer JD, An Z, Zhu Z, Lee MH, Goldfarb DS, Wesson JA, Ward MD. Crystal growth inhibitors for the prevention of L-cystine kidney stones through molecular design. Science. Oct 15 2010;330(6002):337-341. PMID: 20947757, PMCID: PMC5166609
- Bergstralh EJ, Monico CG, Lieske JC, Herges RM, Langman CB, Hoppe B, Milliner DS. Transplantation outcomes in primary hyperoxaluria. Am J Transplant. Nov 2010;10(11):24932501. PMID: 20849551, PMCID: PMC2965313
- Mookadam F, Smith T, Jiamsripong P, Moustafa SE, Monico CG, Lieske JC, Milliner DS. Cardiac abnormalities in primary hyperoxaluria. Circ J. Nov 2010;74(11):2403-2409. PMID: 20921818
- Anglani F, Del Prete D, Peruzzi L. [Participation in the International Dent's disease registry: clinical spin-offs and research prospects]. Giornale italiano di nefrologia : organo ufficiale della Societa italiana di nefrologia. Jan-Feb 2011;28(1):7-8. PMID: 21341234
- Lee HJ, Jeong SJ, Lee EO, Bae H, Lieske JC, Kim SH. 1,2,3,4,6-Penta-O-galloyl-beta-D-glucose reduces renal crystallization and oxidative stress in a hyperoxaluric rat model. Kidney Int. Mar 2011;79(5):538-545. PMID: 1085110
- Murphy S, Reilly MM. Amyloid neuropathies. Advances in Clinical Neuroscience and Rehabilitation. March/April 2011;11(1):16-19.
- Coe FL, Evan A, Worcester E. Pathophysiology-based treatment of idiopathic calcium kidney stones. Clin J Am Soc Nephrol. Aug 2011;6(8):2083-2092. PMID: 21825103, PMCID: PMC5825183
- Rule AD, Krambeck AE, Lieske JC. Chronic kidney disease in kidney stone formers. Clin J Am Soc Nephrol. Aug 2011;6(8):2069-2075. PMID: 21784825, PMCID: PMC3156433
- Goldfarb DS. Potential pharmacologic treatments for cystinuria and for calcium stones associated with hyperuricosuria. Clin J Am Soc Nephrol. Aug 2011;6(8):2093-2097. PMID: 21757641, PMCID: PMC3156434
- Monico CG, Rossetti S, Belostotsky R, Cogal AG, Herges RM, Seide BM, Olson JB, Bergstrahl EJ, Williams HJ, Haley WE, Frishberg Y, Milliner DS. Primary hyperoxaluria type III gene HOGA1 (formerly DHDPSL) as a possible risk factor for idiopathic calcium oxalate urolithiasis. Clin J Am Soc Nephrol. Sep 2011;6(9):2289-2295. PMID: 21896830, PMCID: PMC3358997
- Hoppe B, Groothoff JW, Hulton SA, Cochat P, Niaudet P, Kemper MJ, Deschenes G, Unwin R, Milliner D. Efficacy and safety of Oxalobacter formigenes to reduce urinary oxalate in primary hyperoxaluria. Nephrol Dial Transplant. Nov 2011;26(11):3609-3615. PMID: 21460356
- Lee HJ, Jeong SJ, Park MN, Linnes M, Han HJ, Kim JH, Lieske JC, Kim SH. Gallotannin suppresses calcium oxalate crystal binding and oxalate-induced oxidative stress in renal epithelial cells. Biol Pharm Bull. 2012;35(4):539-544. PMID: 22466558, PMCID: PMC3910304
- Beara-Lasic L, Edvardsson V, Palsson R, Lieske J, Goldfarb D, Milliner D. Genetic Causes of Kidney Stones and Kidney Failure. Clinical Reviews in Bone and Mineral Metabolism. 2012;10(1):2-18.
- de Cogain M, Krambeck AE, Rule AD, Li X, Bergstralh EJ, Gettman MT, Lieske JC. Shock wave lithotripsy and diabetes mellitus: a population-based cohort study. Urology. Feb 2012;79(2):298-302. PMID: 22088569, PMCID: PMC3274621
- Monico CG, Milliner DS. Genetic determinants of urolithiasis. Nature reviews. Nephrology. Mar 2012;8(3):151-162. PMID: 22183508, PMCID: PMC3901084
- Schinstock CA, Semret MH, Wagner SJ, et al. Urinalysis is more specific and urinary neutrophil gelatinase-associated lipocalin is more sensitive for early detection of acute kidney injury. Nephrol Dial Transplant. May 2013;28(5):1175-1185. PMID: 22529161
- Rule AD, Sasiwimonphan K, Lieske JC, Keddis MT, Torres VE, Vrtiska TJ. Characteristics of renal cystic and solid lesions based on contrast-enhanced computed tomography of potential kidney donors. Am J Kidney Dis. May 2012;59(5):611-618. PMID: 22398108, PMCID: PMC3328591
- Dwyer ME, Krambeck AE, Bergstralh EJ, Milliner DS, Lieske JC, Rule AD. Temporal trends in incidence of kidney stones among children: a 25-year population based study. J Urol. Jul 2012;188(1):247-252. PMID: 22595060, PMCID: PMC3482509
- Pang R, Linnes MP, O'Connor HM, Li X, Bergstralh E, Lieske JC. Controlled metabolic diet reduces calcium oxalate supersaturation but not oxalate excretion after bariatric surgery. Urology. Aug 2012;80(2):250-254. PMID: 22554593, PMCID: PMC3411876
- El-Zoghby ZM, Lieske JC, Foley RN, Bergstralh EJ, Li X, Melton LJ, 3rd, Krambeck AE, Rule AD. Urolithiasis and the Risk of ESRD. Clin J Am Soc Nephrol. Sep 2012;7(9):1409-1415. PMID: 22745275, PMCID: PMC3430957
- Riedel TJ, Knight J, Murray MS, Milliner DS, Holmes RP, Lowther WT. 4-Hydroxy-2-oxoglutarate aldolase inactivity in primary hyperoxaluria type 3 and glyoxylate reductase inhibition. Biochim Biophys Acta. Oct 2012;1822(10):1544-1552. PMID: 22771891, PMCID: PMC3418427
- Edvardsson VO, Indridason OS, Haraldsson G, Kjartansson O, Palsson R. Temporal trends in the incidence of kidney stone disease. Kidney Int. Jan 2013;83(1):146-152. PMID: 22992468
- Lorenz EC, Michet CJ, Milliner DS, Lieske JC. Update on oxalate crystal disease. Curr Rheumatol. Rep. Jul 2013;15(7):340. PMID: 23666469, PMCID: PMC3710657
- Sumorok N, Goldfarb DS. Update on cystinuria. Curr Opin Nephrol Hypertens. Jul 2013;22(4):427-431. PMID: 23666417, PMCID: PMC4514483
- Liu X, Arguelles L, Zhou Y, et al. Longitudinal trajectory of vitamin D status from birth to early childhood in the development of food sensitization. Pediatr Res. Sep 2013;74(3):321-326. PMID: 23797532, PMCID: PMC3773018
- Edvardsson VO, Goldfarb DS, Lieske JC, et al. Hereditary causes of kidney stones and chronic kidney disease. Pediatr Nephrol. Oct 2013;28(10):1923-1942. PMID: 23334384, PMCID: PMC4138059
- Fervenza FC. A patient with nephrotic-range proteinuria and focal global glomerulosclerosis. Clin J Am Soc Nephrol. Nov 2013;8(11):1979-1987. PMID: 23886564, PMCID: PMC3817907
- Worcester EM, Evan AP, Coe FL, et al. A test of the hypothesis that oxalate secretion produces proximal tubule crystallization in primary hyperoxaluria type I. Am J Physiol Renal Physiol. Dec 1 2013;305(11):F1574-1584. PMID: 24089413, PMCID: PMC3882369
- Nasr SH, Milliner DS, Wooldridge TD, Sethi S. Triamterene crystalline nephropathy. Am J Kidney Dis. Jan 2014;63(1):148-152. PMID: 23958399
- Modersitzki F, Pizzi L, Grasso M, Goldfarb DS. Health-related quality of life (HRQoL) in cystine compared with non-cystine stone formers. Urolithiasis. Feb 2014;42(1):53-60. PMID: 24253538, PMCID: PMC4514515
- Tang X, Lieske JC. Acute and chronic kidney injury in nephrolithiasis. Curr Opin Nephrol Hypertens. Jul 2014;23(4):385-390. PMID: 24848936, PMCID: PMC4096690
- Meeusen JW, Lieske JC. Looking for a better creatinine. Clin Chem. Aug 2014;60(8):1036-1039. PMID: 24573605
- Fattah H, Hambaroush Y, Goldfarb DS. Cystine nephrolithiasis. Translational Andrology and Urology. Sep 1 2014;3(3):228-233. PMID: 25383320, PMCID: PMC4220544
- Ali FN, Falkner B, Gidding SS, Price HE, Keith SW, Langman CB. Fibroblast growth factor-23 in obese, normotensive adolescents is associated with adverse cardiac structure. J Pediatr. Oct 2014;165(4):738-743 e731. PMID: 25063724, PMCID: PMC4177448
- Zaidan M, Palsson R, Merieau E, et al. Recurrent 2,8-dihydroxyadenine nephropathy: a rare but preventable cause of renal allograft failure. Am J Transplant. Nov 2014;14(11):2623-2632. PMID: 25307253, PMCID: PMC4560835
- Ketha H, Singh RJ, Grebe SK, et al. Altered Calcium and Vitamin D Homeostasis in First-Time Calcium Kidney Stone-Formers. PLoS ONE. 2015;10(9):e0137350. PMID: 26332888, PMCID: PMC4558059
- Sigurjonsdottir VK, Runolfsdottir HL, Indridason OS, Palsson R, Edvardsson VO. Impact of nephrolithiasis on kidney function. BMC Nephrol. 2015;16:149. PMID: 26316205, PMCID: PMC4551564
- Berini SE, Tracy JA, Engelstad JK, Lorenz EC, Milliner DS, Dyck PJ. Progressive polyradiculoneuropathy due to intraneural oxalate deposition in type 1 primary hyperoxaluria. Muscle Nerve. Mar 2015;51(3):449-454. PMID: 25363903, PMCID: PMC4577279
- Carrasco A, Jr, Granberg CF, Gettman MT, Milliner DS, Krambeck AE. Surgical management of stone disease in patients with primary hyperoxaluria. Urology. Mar 2015;85(3):522-526. PMID: 25733260, PMCID: PMC4559267
- Deng F, Finer G, Haymond S, Brooks E, Langman CB. Applicability of estimating glomerular filtration rate equations in pediatric patients: comparison with a measured glomerular filtration rate by iohexol clearance. Transl Res. Mar 2015;165(3):437-445. PMID: 25445208, PMCID: PMC4346435
- Tang X, Bergstralh EJ, Mehta RA, Vrtiska TJ, Milliner DS, Lieske JC. Nephrocalcinosis is a risk factor for kidney failure in primary hyperoxaluria. Kidney Int. Mar 2015;87(3):623-631. PMID: 25229337, PMCID: PMC4344931
- Lieske JC, Mehta RA, Milliner DS, Rule AD, Bergstralh EJ, Sarr MG. Kidney stones are common after bariatric surgery. Kidney Int. Apr 2015;87(4):839-845. PMID: 25354237, PMCID: PMC4382441
- Lee MH, Sahota A, Ward MD, Goldfarb DS. Cystine growth inhibition through molecular mimicry: a new paradigm for the prevention of crystal diseases. Curr Rheumatol Rep. May 2015;17(5):510. PMID: 25874348, PMCID: PMC4518543
- Kovacevic L, Lu H, Goldfarb DS, Lakshmanan Y, Caruso JA. Urine proteomic analysis in cystinuric children with renal stones. J Pediatr Urol. Aug 2015;11(4):217 e211-216. PMID: 26076823, PMCID: PMC4540695
- Hopp K, Cogal AG, Bergstralh EJ, et al. Phenotype-Genotype Correlations and Estimated Carrier Frequencies of Primary Hyperoxaluria. J Am Soc Nephrol. Oct 2015;26(10):2559-2570. PMID: 25644115, PMCID: PMC4587693
- Perinpam M, Ware EB, Smith JA, Turner ST, Kardia SL, Lieske JC. Effect of Demographics on Excretion of Key Urinary Factors Related to Kidney Stone Risk. Urology. Oct 2015;86(4):690696. PMID: 26206452, PMCID: PMC4592816
- Sahota A, Parihar JS, Capaccione KM, et al. Novel cystine ester mimics for the treatment of cystinuria-induced urolithiasis in a knockout mouse model. Urology. Nov 2014;84(5):1249 e1249-1215. PMID: 25443947, PMCID: PMC4498569
- Goldfarb DS, Hirsch J. Hypothesis: Urbanization and exposure to urban heat islands contribute to increasing prevalence of kidney stones. Med Hypotheses. Dec 2015;85(6):953-957. PMID: 26372336, PMCID: PMC4648638
- Amin R, Eid L, Edvardsson VO, Fairbanks L, Moudgil A. An unusual cause of pink diapers in an infant: Questions and Answers. Pediatr Nephrol. 2016;31(4):575, 577-580. PMID: 25823987, PMCID: PMC4591217
- Barnett C, Nazzal L, Goldfarb DS, Blaser MJ. The Presence of Oxalobacter formigenes in the Microbiome of Healthy Young Adults. J Urol. 2016;195(2):499-506. PMID: 26292041, PMCID: PMC4747808
- Giesen C, Lieske JC. The Influence of Processing and Storage Conditions on Renal Protein Biomarkers. Clin J Am Soc Nephrol. 2016;11(10):1726-1728. PMID: 27654929, PMCID: PMC5053796
- Hu L, Yang Y, Aloysius H, et al. l-Cystine Diamides as l-Cystine Crystallization Inhibitors for Cystinuria. J Med Chem. 2016;59(15):7293-7298. PMID: 27409142, PMCID: PMC5774851
- Kovacevic L, Lu H, Caruso JA, Lakshmanan Y. Renal Tubular Dysfunction in Pediatric Urolithiasis: Proteomic Evidence. Urology. 2016;92:100-105. PMID: 26892647, PMCID: PMC4891186
- Merkel PA, Manion M, Gopal-Srivastava R, et al. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66. PMID: 27194034, PMCID: PMC4870759
- Scales CD, Jr., Tasian GE, Schwaderer AL, Goldfarb DS, Star RA, Kirkali Z. Urinary Stone Disease: Advancing Knowledge, Patient Care, and Population Health. Clin J Am Soc Nephrol. 2016;11(7):1305-1312. PMID: 26964844, PMCID: PMC4934851
- Thorsteinsdottir M, Thorsteinsdottir UA, Eiriksson FF, et al. Quantitative UPLC-MS/MS assay of urinary 2,8-dihydroxyadenine for diagnosis and management of adenine phosphoribosyltransferase deficiency. J Chromatogr B Analyt Technol Biomed Life Sci. 2016;1036-1037:170-177. PMID: 27770717, PMCID: PMC5445224
- Wang X, Anglani F, Beara-Lasic L, et al. Glomerular Pathology in Dent Disease and Its Association with Kidney Function. Clin J Am Soc Nephrol. 2016;11(12):2168-2176. PMID: 27697782, PMCID: PMC5142066
- Whittamore JM, Hatch M. The role of intestinal oxalate transport in hyperoxaluria and the formation of kidney stones in animals and man. Urolithiasis. 2016;45(1):89-108. PMID: 27913853, PMCID: PMC5358548
- Zhao F, Bergstralh EJ, Mehta RA, et al. Predictors of Incident ESRD among Patients with Primary Hyperoxaluria Presenting Prior to Kidney Failure. Clin J Am Soc Nephrol. Jan 7 2016;11(1):119-126. PMID: 26656319, PMCID: PMC4702224
- Lieske JC, Turner ST, Edeh SN, Ware EB, Kardia SL, Smith JA. Heritability of dietary traits that contribute to nephrolithiasis in a cohort of adult sibships. Journal of Nephrology. Feb 2016;29(1):45-51. PMID: 25963767, PMCID: PMC4643420
- Runolfsdottir HL, Palsson R, Agustsdottir IM, Indridason OS, Edvardsson VO. Kidney Disease in Adenine Phosphoribosyltransferase Deficiency. Am J Kidney Dis. Mar 2016;67(3):431-438. PMID: 26724837, PMCID: PMC4819988
- Brooks ER, Hoppe B, Milliner DS, et al. Assessment of Urine Proteomics in Type 1 Primary Hyperoxaluria. Am J Nephrol. May 3 2016;43(4):293-303. PMID: 27161247, PMCID: PMC4904731
- Dhondup T, Lorenz EC, Milliner DS, Lieske JC. Combined Liver-Kidney Transplantation for Primary Hyperoxaluria Type 2: A Case Report. Am J Transplant. 2017. PMID: 28681512, PMCID: PMC5739996
- Edvardsson VO, Runolfsdottir HL, Thorsteinsdottir UA, et al. Comparison of the effect of allopurinol and febuxostat on urinary 2,8-dihydroxyadenine excretion in patients with APRT deficiency: A clinical trial. European Journal of Internal Medicine. 2017. PMID: 29241594, PMCID: PMC5817015
- Gianesello L, Priante G, Ceol M, et al. Albumin uptake in human podocytes: a possible role for the cubilin-amnionless (CUBAM) complex. Scientific Reports. 2017;7(1):13705. PMID: 29057905, PMCID: PMC5651885
- Goldfarb DS. Refining Diagnostic Approaches in Nephrolithiasis: Incomplete Distal Renal Tubular Acidosis. Clin J Am Soc Nephrol. 2017;12(9):1380-1382. PMID: 28775128, PMCID: PMC5586576
- Goldfarb DS, Grasso M. Case Study - Case Studies in Cystinuria. Urol Nurs. 2017;37(2):90-93. PMID: 29240374, PMCID: PMC5764755
- Goldstein B, Goldfarb DS. Early Recognition and Management of Rare Kidney Stone Disorders. Urol Nurs. 2017;37(2):81-89, 102. PMID: 29240373, PMCID: PMC5764757
- Mulay SR, Eberhard JN, Desai J, et al. Hyperoxaluria Requires TNF Receptors to Initiate Crystal Adhesion and Kidney Stone Disease. J Am Soc Nephrol. 2017;28(3):761-768. PMID: 27612997, PMCID: PMC5328164
- Perinpam M, Enders FT, Mara KC, et al. Plasma oxalate in relation to eGFR in patients with primary hyperoxaluria, enteric hyperoxaluria and urinary stone disease. Clin Biochem. 2017;50(18):1014-1019. PMID: 28764885, PMCID: PMC5705406
- Goldfarb DS. Empiric therapy for kidney stones. Urolithiasis. 2018. PMID: 30478476
- Kovacevic L, Caruso JA, Lu H, et al. Urine proteomic profiling in patients with nephrolithiasis and cystinuria. Int Urol Nephrol. 2018. PMID: 30519981
- Policastro LJ, Saggi SJ, Goldfarb DS, Weiss JP. Personalized Intervention in Monogenic Stone Formers. J Urol. 2018;199(3):623-632. PMID: 29061541, PMCID: PMC5910290
- Thorsteinsdottir M, Thorsteinsdottir UA, Eiriksson FF, et al. Corrigendum to "Quantitative UPLC-MS/MS assay of urinary 2,8-dihydroxyadenine for diagnosis and management of adenine phosphoribosyltransferase deficiency" [J. Chromatogr. B 1036-1037 (2016) 170-177]. J Chromatogr B Analyt Technol Biomed Life Sci. 2018;1092:530. PMID: 29861153
- D'Costa MR, Winkler NS, Milliner DS, Norby SM, Hickson LJ, Lieske JC. Oxalosis Associated With High-Dose Vitamin C Ingestion in a Peritoneal Dialysis Patient. Am J Kidney Dis. 2019. PMID: 30910370
- Malieckal DA, Modersitzki F, Mara K, Enders FT, Asplin JR, Goldfarb DS. Effect of increasing doses of cystine-binding thiol drugs on cystine capacity in patients with cystinuria. Urolithiasis. 2019. PMID: 30980122
- Shen F, Zhao Y, Wang L, et al. Rare disease knowledge enrichment through a data-driven approach. BMC Med Inform Decis Mak. 2019;19(1):32. PMID: 30764825, PMCID: PMC6376651
Rare Lung Diseases Consortium
Book Chapters
- Krischer JP. Clinical trials for rare lung diseases. In: McCormack FX, Panos RJ, Trapnell BC, eds. Molecular Basis of Pulmonary Disease. 1st ed: Springer; 2010.
Journal Articles
- Krischer JP. Clinical trials for rare lung diseases. In: McCormack FX, Panos RJ, Trapnell BC, eds. Molecular Basis of Pulmonary Disease. 1st ed: Springer; 2010. Journal Articles
- Whitsett JA, Wert SE, Trapnell BC. Genetic disorders influencing lung formation and function at birth. Hum Mol Genet. Oct 1 2004;13 Spec No 2:R207-215. PMID: 15358727
- Uchida K, Beck DC, Yamamoto T, Berclaz PY, Abe S, Staudt MK, Carey BC, Filippi MD, Wert SE, Denson LA, Puchalski JT, Hauck DM, Trapnell BC. GM-CSF autoantibodies and neutrophil dysfunction in pulmonary alveolar proteinosis. N Engl J Med. Feb 8 2007;356(6):567-579. PMID: 17287477
- Juvet SC, McCormack FX, Kwiatkowski DJ, Downey GP. Molecular pathogenesis of lymphangioleiomyomatosis: lessons learned from orphans. Am J Respir Cell Mol Biol. Apr 2007;36(4):398-408. PMID: 17099139, PMCID: PMC2176113
- Deterding R. Evaluating infants and children with interstitial lung disease. Semin Respir Crit Care Med. Jun 2007;28(3):333-341. PMID: 17562503
- Trotta BM, Stolin AV, Williams MB, Gay SB, Brody AS, Altes TA. Characterization of the relation between CT technical parameters and accuracy of quantification of lung attenuation on quantitative chest CT. AJR - American Journal of Roentgenology. Jun 2007;188(6):1683-1690. PMID: 17515394
- Deutsch GH, Young LR, Deterding RR, Fan LL, Dell SD, Bean JA, Brody AS, Nogee LM, Trapnell BC, Langston C, Albright EA, Askin FB, Baker P, Chou PM, Cool CM, Coventry SC, Cutz E, Davis MM, Dishop MK, Galambos C, Patterson K, Travis WD, Wert SE, White FV. Diffuse lung disease in young children: application of a novel classification scheme. Am J Respir Crit Care Med. Dec 1 2007;176(11):1120-1128. PMID: 17885266, PMCID: PMC2176101
- Young LR, Inoue Y, McCormack FX. Diagnostic potential of serum VEGF-D for lymphangioleiomyomatosis. N Engl J Med. Jan 10 2008;358(2):199-200. PMID: 18184970, PMCID: PMC3804557
- Inoue Y, Trapnell BC, Tazawa R, Arai T, Takada T, Hizawa N, Kasahara Y, Tatsumi K, Hojo M, Ichiwata T, Tanaka N, Yamaguchi E, Eda R, Oishi K, Tsuchihashi Y, Kaneko C, Nukiwa T, Sakatani M, Krischer JP, Nakata K. Characteristics of a large cohort of patients with autoimmune pulmonary alveolar proteinosis in Japan. Am J Respir Crit Care Med. Apr 1 2008;177(7):752762. PMID: 18202348, PMCID: PMC2720118
- Suzuki T, Sakagami T, Rubin BK, Nogee LM, Wood RE, Zimmerman SL, Smolarek T, Dishop MK, Wert SE, Whitsett JA, Grabowski G, Carey BC, Stevens C, van der Loo JC, Trapnell BC. Familial pulmonary alveolar proteinosis caused by mutations in CSF2RA. J Exp Med. Nov 24 2008;205(12):2703-2710. PMID: 18955570, PMCID: PMC2585845
- Schmithorst VJ, Altes TA, Young LR, Franz DN, Bissler JJ, McCormack FX, Dardzinski BJ, Brody AS. Automated algorithm for quantifying the extent of cystic change on volumetric chest CT: initial results in Lymphangioleiomyomatosis. AJR - American Journal of Roentgenology. Apr 2009;192(4):1037-1044. PMID: 19304711
- Trapnell BC, Carey BC, Uchida K, Suzuki T. Pulmonary alveolar proteinosis, a primary immunodeficiency of impaired GM-CSF stimulation of macrophages. Curr Opin Immunol. Oct 2009;21(5):514-521. PMID: 19796925, PMCID: PMC2779868
- Tazawa R, Trapnell BC, Inoue Y, Arai T, Takada T, Nasuhara Y, Hizawa N, Kasahara Y, Tatsumi K, Hojo M, Ishii H, Yokoba M, Tanaka N, Yamaguchi E, Eda R, Tsuchihashi Y, Morimoto K, Akira M, Terada M, Otsuka J, Ebina M, Kaneko C, Nukiwa T, Krischer JP, Akazawa K, Nakata K. Inhaled granulocyte/macrophage-colony stimulating factor as therapy for pulmonary alveolar proteinosis. Am J Respir Crit Care Med. Jun 15 2010;181(12):1345-1354. PMID: 20167854, PMCID: PMC2894410
- Ingelfinger JR, Drazen JM. Patient organizations and research on rare diseases. N Engl J Med. Apr 28 2011;364(17):1670-1671. PMID: 21410388
- McCormack FX, Inoue Y, Moss J, et al. Efficacy and safety of sirolimus in lymphangioleiomyomatosis. N Engl J Med. Apr 28 2011;364(17):1595-1606. PMID: 21410393, PMCID: PMC3118601
- Rosenbaum L. How Much Would You Give to Save a Dying Bird? Patient Advocacy and Biomedical Research. N Engl J Med. 2012;367(18):1755-1759. PMID: 23113489
- Suzuki T, Arumugam P, Sakagami T, et al. Pulmonary macrophage transplantation therapy. Nature. Oct 23 2014;514(7523):450-454. PMID: 25274301, PMCID: PMC4236859
- Trapnell BC. A lymphocyte-mediated cause of secondary PAP. Blood. Jan 8 2015;125(2):215216. PMID: 25573969
- Fan LL, Dishop MK, Galambos C, et al. Diffuse Lung Disease in Biopsied Children 2 to 18 Years of Age. Application of the chILD Classification Scheme. Annals of the American Thoracic Society. Oct 2015;12(10):1498-1505. PMID: 26291470, PMCID: PMC4627419
- Saito A, Nikolaidis NM, Amlal H, et al. Modeling pulmonary alveolar microlithiasis by epithelial deletion of the Npt2b sodium phosphate cotransporter reveals putative biomarkers and strategies for treatment. Sci Transl Med. Nov 11 2015;7(313):313ra181. PMID: 26560359, PMCID: PMC4764987
- Argula RG, Kokosi M, Lo P, et al. A Novel Quantitative Computed Tomographic Analysis Suggests How Sirolimus Stabilizes Progressive Air Trapping in Lymphangioleiomyomatosis. Annals of the American Thoracic Society. 2016;13(3):342-349. PMID: 26799509, PMCID: PMC5015717
- Campo I, Luisetti M, Griese M, et al. A Global Survey on Whole Lung Lavage in Pulmonary Alveolar Proteinosis. Chest. 2016;150(1):251-253. PMID: 27396783, PMCID: PMC6026236
- Campo I, Luisetti M, Griese M, et al. Whole lung lavage therapy for pulmonary alveolar proteinosis: a global survey of current practices and procedures. Orphanet J Rare Dis. 2016;11(1):115. PMID: 27577926, PMCID: PMC5006612
- El-Chemaly S, Young LR. Hermansky-Pudlak Syndrome. Clin Chest Med. 2016;37(3):505-511. PMID: 27514596, PMCID: PMC4987498
- McCormack FX, Gupta N, Finlay GR, et al. Official American Thoracic Society/Japanese Respiratory Society Clinical Practice Guidelines: Lymphangioleiomyomatosis Diagnosis and Management. Am J Respir Crit Care Med. 2016;194(6):748-761. PMID: 27628078, PMCID: PMC5803656
- O'Brien KJ, Lozier J, Cullinane AR, et al. Identification of a novel mutation in HPS6 in a patient with hemophilia B and oculocutaneous albinism. Mol Genet Metab. 2016;119(3):284-287. PMID: 27641950, PMCID: PMC5083180
- Osterburg AR, Nelson RL, Yaniv BZ, et al. NK cell activating receptor ligand expression in lymphangioleiomyomatosis is associated with lung function decline. JCI insight. 2016;1(16):e87270. PMID: 27734028, PMCID: PMC5053147
- Sahin M, Henske EP, Manning BD, et al. Advances and Future Directions for Tuberous Sclerosis Complex Research: Recommendations From the 2015 Strategic Planning Conference. Pediatr Neurol. 2016;60:1-12. PMID: 27267556, PMCID: PMC4921275
- Vicary GW, Vergne Y, Santiago-Cornier A, Young LR, Roman J. Pulmonary Fibrosis in Hermansky-Pudlak Syndrome. Annals of the American Thoracic Society. 2016;13(10):1839-1846. PMID: 27529121, PMCID: PMC5466158
- Young LR, Trapnell BC, Mandl KD, Swarr DT, Wambach JA, Blaisdell CJ. Accelerating Scientific Advancement for Pediatric Rare Lung Disease Research. Report from a National Institutes of Health-NHLBI Workshop, September 3 and 4, 2015. Annals of the American Thoracic Society. 2016;13(12):385-393. PMID: 27925785, PMCID: PMC5291498
- Cooley J, Lee YCG, Gupta N. Spontaneous pneumothorax in diffuse cystic lung diseases. Curr Opin Pulm Med. 2017;23(4):323-333. PMID: 28590337, PMCID: PMC5563542
- Gaskill CF, Carrier EJ, Kropski JA, et al. Disruption of lineage specification in adult pulmonary mesenchymal progenitor cells promotes microvascular dysfunction. J Clin Invest. 2017;127(6):2262-2276. PMID: 28463231, PMCID: PMC5451236
- Gupta N, Kopras EJ, Henske EP, et al. Spontaneous Pneumothoraces in Patients with Birt-HoggDube Syndrome. Annals of the American Thoracic Society. 2017;14(5):706-713. PMID: 28248571, PMCID: PMC5427741
- Gupta N, Langenderfer D, McCormack FX, Schauer DP, Eckman MH. Chest Computed Tomographic Image Screening for Cystic Lung Diseases in Patients with Spontaneous Pneumothorax Is Cost Effective. Annals of the American Thoracic Society. 2017;14(1):17-25. PMID: 27737563, PMCID: PMC5461992
- Hetzel M, Suzuki T, Hashtchin AR, et al. Function and Safety of Lentivirus-Mediated Gene Transfer for CSF2RA-Deficiency. Human Gene Therapy Methods. 2017;28(6):318-329. PMID: 28854814, PMCID: PMC5734162
- Kropski JA, Reiss S, Markin C, et al. Rare Genetic Variants in PARN Are Associated with Pulmonary Fibrosis in Families. Am J Respir Crit Care Med. 2017;196(11):1481-1484. PMID: 28414520, PMCID: PMC5736978
- Kropski JA, Young LR, Cogan JD, et al. Genetic Evaluation and Testing of Patients and Families with Idiopathic Pulmonary Fibrosis. Am J Respir Crit Care Med. 2017;195(11):1423-1428. PMID: 27786550, PMCID: PMC5470751
- Kugathasan S, Denson LA, Walters TD, et al. Prediction of complicated disease course for children newly diagnosed with Crohn's disease: a multicentre inception cohort study. Lancet. 2017;389(10080):1710-1718. PMID: 28259484, PMCID: PMC5719489
- Liu H, Jakubzick C, Osterburg AR, et al. Dendritic Cell Trafficking and Function in Rare Lung Diseases. Am J Respir Cell Mol Biol. 2017;57(4):393-402. PMID: 28586276, PMCID: PMC5650088
- McCormack FX, Gupta N, Finlay GR, et al. Reply: The ATS/JRS Guidelines on Lymphangioleiomyomatosis: Filling in the Gaps. Am J Respir Crit Care Med. 2017;196(5):660661. PMID: 28288285, PMCID: PMC5803663
- Mueller C, Gernoux G, Gruntman AM, et al. 5 Year Expression and Neutrophil Defect Repair after Gene Therapy in Alpha-1 Antitrypsin Deficiency. Mol Ther. 2017;25(6):1387-1394. PMID: 28408179, PMCID: PMC5474959
- Kropski JA, Blackwell TS. Endoplasmic reticulum stress in the pathogenesis of fibrotic disease. J Clin Invest. 2018;128(1):64-73. PMID: 29293089, PMCID: PMC5749533
- McCarthy C, Avetisyan R, Carey BC, Chalk C, Trapnell BC. Prevalence and healthcare burden of pulmonary alveolar proteinosis. Orphanet J Rare Dis. 2018;13(1):129. PMID: 30064481, PMCID: PMC6069872
- McCarthy C, Lee E, Bridges JP, et al. Statin as a novel pharmacotherapy of pulmonary alveolar proteinosis. Nature Communications. 2018;9(1):3127. PMID: 30087322, PMCID: PMC6081448
- Sivley RM, Sheehan JH, Kropski JA, et al. Three-dimensional spatial analysis of missense variants in RTEL1 identifies pathogenic variants in patients with Familial Interstitial Pneumonia. BMC Bioinformatics. 2018;19(1):18. PMID: 29361909, PMCID: PMC5781290
- Wajda N, Gupta N. Air Travel-Related Spontaneous Pneumothorax in Diffuse Cystic Lung Diseases. Current Pulmonology Reports. 2018;7(2):56-62. PMID: 30859057, PMCID: PMC6407859
- Stearman RS, Cornelius AR, Young LR, et al. Familial Pulmonary Fibrosis and Hermansky-Pudlak Syndrome Rare Missense Mutations In Context. Am J Respir Crit Care Med. 2019. PMID: 30985222
Rare Thrombotic Diseases Consortium
Journal Articles
- Ortel TL. Thrombosis and the antiphospholipid syndrome. Hematology Am Soc Hematol Educ Program. 2005:462-468. PMID: 16304421
- Potti A, Ramiah V, Ortel TL. Thrombophilia and thrombosis in thrombotic thrombocytopenic purpura. Semin Thromb Hemost. Dec 2005;31(6):652-658. PMID: 16388416
- Lewis DA, Pound ML, Ortel TL. The reactivity of paired plasma and serum samples are comparable in the anticardiolipin and anti-beta2-glycoprotein-1 ELISAs. J Thromb Haemost. Jan 2006;4(1):265-267. PMID: 16409482
- Arepally GM, Ortel TL. Clinical practice. Heparin-induced thrombocytopenia. N Engl J Med. Aug 24 2006;355(8):809-817. PMID: 16928996
- Ortel TL. The antiphospholipid syndrome: what are we really measuring? How do we measure it? And how do we treat it? J Thromb Thrombolysis. Feb 2006;21(1):79-83. PMID: 16475047
- Potti A, Bild A, Dressman HK, Lewis DA, Nevins JR, Ortel TL. Gene-expression patterns predict phenotypes of immune-mediated thrombosis. Blood. Feb 15 2006;107(4):1391-1396. PMID: 16263789, PMCID: PMC1895419
- Perry SL, O'Shea SI, Byrne S, Szczech LA, Ortel TL. A multi-dose pharmacokinetic study of dalteparin in haemodialysis patients. Thromb Haemost. Dec 2006;96(6):750-755. PMID: 17139369
- Welsby IJ, Jones WL, Arepally G, De Lange F, Yoshitani K, Phillips-Bute B, Grocott HP, Becker R, Mackensen GB. Effect of combined anticoagulation using heparin and bivalirudin on the hemostatic and inflammatory responses to cardiopulmonary bypass in the rat. Anesthesiology. Feb 2007;106(2):295-301. PMID: 17264724
- Hoffman M, Colina CM, McDonald AG, Arepally GM, Pedersen L, Monroe DM. Tissue factor around dermal vessels has bound factor VII in the absence of injury. J Thromb Haemost. Jul 2007;5(7):1403-1408. PMID: 17425666
- Krakow EF, Goudar R, Petzold E, Suvarna S, Last M, Welsby IJ, Ortel TL, Arepally GM. Influence of sample collection and storage on the detection of platelet factor 4-heparin antibodies. Am J Clin Pathol. Jul 2007;128(1):150-155. PMID: 17580283
- Whitlatch NL, Perry SL, Ortel TL. Anti-heparin/platelet factor 4 antibody optical density values and the confirmatory procedure in the diagnosis of heparin-induced thrombocytopenia. Thromb Haemost. Oct 2008;100(4):678-684. PMID: 18841292, PMCID: PMC2575642
- Ortel TL. Heparin-induced thrombocytopenia: when a low platelet count is a mandate for anticoagulation. Hematology Am Soc Hematol Educ Program. Jan. 1 2009:225-232. PMID: 20008202
- Perry SL, Whitlatch NL, Ortel TL. Heparin-dependent platelet factor 4 antibodies and the impact of renal function on clinical outcomes: a retrospective study in hospitalized patients. J Thromb Thrombolysis. Aug 2009;28(2):146-150. PMID: 18839279, PMCID: PMC2713799
- Kuderer NM, Ortel TL, Francis CW. Impact of venous thromboembolism and anticoagulation on cancer and cancer survival. J Clin Oncol. Oct 10 2009;27(29):4902-4911. PMID: 19738120, PMCID: PMC2799059
- Arepally GM, Ortel TL. Heparin-induced thrombocytopenia. Annu Rev Med. 2010;61:77-90. PMID: 20059332
Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium
Book Chapters
- Percy A. Rett syndrome: clinical and molecular update. Current Opinion in Pediatrics. Vol 162004:670-677.
- Percy A. Rett syndrome. In: Maria B, ed. Current Management in Child Neurology. 3rd ed. Hamilton, Ontario: BC Decker; 2005.
- Percy A. Rett syndrome: clinical update and future prospects. In: Rubin IL, Crocker AC, eds. Medical Care for Children and Adults with Developmental Disabilities. 2nd ed. Baltimore: Paul H. Brookes Publishing 2006:171-178.
- Percy A. Rett syndrome. In: McMillan J, Feigin RD, DeAngelis C, Jones MD, eds. Oski's Pediatrics: Principles & Practice. 5th ed. Philadelphia: Lippincott Williams & Wilkins; 2006:2361-2363.
- Tarquinio D, Percy A. Rett disorder. In: Hollander E, Loklevzon A, Coyle JT, eds. APPI Textbook of Autism Spectrum Disorder2008.
- Neul J. Rett syndrome and MECP2-related disorders. Autism Spectrum Disorders: Oxford University Press; 2009.
- Percy A, Lane J. Rett syndrome. In: Maria B, ed. Current Management in Child Neurology. Vol 375-382. Hamilton, Ontario: BC Decker; 2009.
- Calfa G, Pozzo-Miller L, Percy A. Rett Syndrome: On Clinical and Genetic Features and Experimental Models Based on MECP2 Dysfunction. In: Powell C, Monteggia L, eds. The Autisms: Molecules to Model Systems. NY: Oxford University Press; 2013:57-90.
- Chapleau C, Lane J, Pozz-Miller L, Percy A. Rett Syndrome: A Model of Genetic Neurodevelopmental Disorders. In: Puiu M, ed. Genetic Disorders: InTech; 2013.
Abstracts Presented at Conferences
- Van den Veyver I, Amir R, Fang P, Yu Z, Glaze D, Percy A, Zoghbi H, Roa B. Mutations in the newly discovered coding exon 1 of MECP2 are a rare cause of classic Rett syndrome. Paper presented at: ASHG 54th Annual Meeting; October, 2004; Toronto.
- Neul J, Glaze D, Percy A, Lane J, Barrish J. Specific MECP2 mutations confer different severity in Rett syndrome. Paper presented at: Child Neurology Society 34th Annual Meeting2005; Los Angeles, CA.
- Fang P, Ward P, Glaze D, Van den Veyver I, Percy A, Zoghbi H, Roa B. Comprehensive clinical testing of the MECP2 gene for Rett syndrome. Paper presented at: American College of Medical Genetics Annual Meeting; March, 2005.
- Roa B, Ward P, Glaze D, Neul J, Van den Veyver I, Percy A, Zoghbi H, Fang P. Clinical molecular testing for rett syndrome: comprehensive analysis for point mutations and large rearrangements in the MECP2 gene. Paper presented at: Rett Syndrome Research Foundation Annual Meeting; Jun 27-29, 2005; Chicago, IL.
- Fang P, Ward P, Berry S, Irons M, Chong B, Van den Veyver I, Neul J, Percy A, Glaze D, Zoghbi H, Roa B. MECP2 gene rearrangements in female and male patients with features of Rett syndrome. Paper presented at: American Society of Human Genetics 55th Annual Meeting; October, 2005; Salt Lake City, UT.
- Percy A. Summary of clinical trials experience in Rett syndrome. Paper presented at: Clinical Trials In Rett Syndrome International Workshop; May 29-31, 2006; San Francisco, CA.
- Percy A. Gene therapy in Rett syndrome. Paper presented at: Clinical Trials In Rett Syndrome International Workshop; May 29-31, 2006; San Francisco, CA.
- Percy A. Rett syndrome: current status and new directions. Paper presented at: 10th Annual International Child Neurology Congress; June, 2006; Montreal, Canada.
- Percy A. Syndromic forms of mental retardation, neurogenetics for the practitioner. Paper presented at: R. O. Brady Lecture in Neurogenetics; Nov 10, 2006; New York, NY.
- Percy A. Rett syndrome and MECP2: understanding the genotype-phenotype correlations. Paper presented at: National Society of Genetic Counselors; Nov 13, 2006; Nashville, TN.
- Tarquinio D, Lane J, Percya A. The natural history of Rett syndrome: phenotypic differences in classical rett syndrome are associated with specific MECP2 mutations. Paper presented at: Rare Disease Clinical Research Network Conference on Clinical Research for Rare Diseases; September, 2007; Bethesda, MD.
- Tarquinio D, Motil K, Glaze D, Skinner S, Neul J, Annese F, Barrish J, Geerts S, Lane J, Percy A. Growth charts for Rett syndrome: birth to 18 years of age. Paper presented at: Child Neurology Society meeting2008.
- Peters SU, Tavyev J, Zhang F, Zoghbi H. An emerging behavioral phenotype in female carriers with MECP2 duplications: implications for the broad autism phenotype. Paper presented at: The Keystone Symposia: Toward a Pathophysiology of Autism; February 24, 2008; Santa Fe, NM.
- Kirby R, Percy A, Lane J, Glaze D, Skinner S, MacLeod P, Barrish J, Annese F. Longevity in Rett syndrome: probing the North American database. Paper presented at: Child Neurology Society meeting; November, 2008.
- Tarquinio D, Motil K, Glaze D, Skinner S, Neul J, Annese F, Barrish J, Geerts S, Lane J, Percy A. Growth charts for Rett syndrome: birth to 18 years of age. Paper presented at: American Academy of Neurology annual meeting; April, 2009; Seattle, WA.
- Glaze D, Percy A, Skinner S, Motil K, Neul J, Barrish J, Lane J, Geerts S, Annese F, Graham J, McNair L. Natural history of Rett syndrome: epilepsy. Paper presented at: Pediatric Academic Society meeting; May 2-9, 2009.
- Percy A, Lee H-S, Glaze D, Skinner S, Motil K, Neul J, Barrish J, Lane J, Geerts S, Annese F, Graham J, McNair L. Profiling scoliosis in Rett syndrome. Paper presented at: Pediatric Academic Society meeting; May 2-9, 2009.
Journal Articles
- Neul JL, Maricich SM, Islam M, Barrish J, Smith EO, Bottiglieri T, Hyland K, Humphreys P, Percy A, Glaze D. Spinal fluid 5-methyltetrahydrofolate levels are normal in Rett syndrome. Neurology. Jun 28 2005;64(12):2151-2152. PMID: 15985595
- Percy AK, Lane JB. Rett syndrome: model of neurodevelopmental disorders. J Child Neurol. Sep 2005;20(9):718-721. PMID: 16225824
- Tofil NM, Buckmaster MA, Winkler MK, Callans BH, Islam MP, Percy AK. Deep sedation with propofol in patients with Rett syndrome. J Child Neurol. Mar 2006;21(3):210-213. PMID: 16901422
- Motil KJ, Schultz RJ, Abrams S, Ellis KJ, Glaze DG. Fractional calcium absorption is increased in girls with Rett syndrome. J Pediatr Gastroenterol Nutr. Apr 2006;42(4):419-426. PMID: 16641581
- Kankirawatana P, Leonard H, Ellaway C, Scurlock J, Mansour A, Makris CM, Dure LSt, Friez M, Lane J, Kiraly-Borri C, Fabian V, Davis M, Jackson J, Christodoulou J, Kaufmann WE, Ravine D, Percy AK. Early progressive encephalopathy in boys and MECP2 mutations. Neurology. Jul 11 2006;67(1):164-166. PMID: 16832102
- del Gaudio D, Fang P, Scaglia F, Ward PA, Craigen WJ, Glaze DG, Neul JL, Patel A, Lee JA, Irons M, Berry SA, Pursley AA, Grebe TA, Freedenberg D, Martin RA, Hsich GE, Khera JR, Friedman NR, Zoghbi HY, Eng CM, Lupski JR, Beaudet AL, Cheung SW, Roa BB. Increased MECP2 gene copy number as the result of genomic duplication in neurodevelopmentally delayed males. Genet Med. Dec 2006;8(12):784-792. PMID: 17172942
- Percy AK, Lane JB, Childers J, Skinner S, Annese F, Barrish J, Caeg E, Glaze DG, MacLeod P. Rett syndrome: North American database. J Child Neurol. Dec 2007;22(12):1338-1341. PMID: 18174548
- Percy A. Rett Syndrome: From Recognition to Diagnosis to Intervention. Expert Review of Endocrinology & Metabolism. 2008;3(3):327-336.
- Bebbington A, Anderson A, Ravine D, Fyfe S, Pineda M, de Klerk N, Ben-Zeev B, Yatawara N, Percy A, Kaufmann WE, Leonard H. Investigating genotype-phenotype relationships in Rett syndrome using an international data set. Neurology. Mar 11 2008;70(11):868-875. PMID: 18332345
- Neul JL, Fang P, Barrish J, Lane J, Caeg EB, Smith EO, Zoghbi H, Percy A, Glaze DG. Specific mutations in methyl-CpG-binding protein 2 confer different severity in Rett syndrome. Neurology. Apr 15 2008;70(16):1313-1321. PMID: 18337588, PMCID: PMC2677974
- Percy AK. Rett syndrome: recent research progress. J Child Neurol. May 2008;23(5):543-549. PMID: 18056689
- Motil KJ, Ellis KJ, Barrish JO, Caeg E, Glaze DG. Bone mineral content and bone mineral density are lower in older than in younger females with Rett syndrome. Pediatr Res. Oct 2008;64(4):435-439. PMID: 18535484, PMCID: PMC2663405
- Louise S, Fyfe S, Bebbington A, Bahi-Buisson N, Anderson A, Pineda M, Percy A, Zeev BB, Wu XR, Bao X, Leod PM, Armstrong J, Leonard H. InterRett, a model for international data collection in a rare genetic disorder. Research in Autism Spectrum Disorders. 2009;3(3):639659. PMID: 24348750, PMCID: PMC3858578
- Rudaz CG, Matagne V, Ronnekleiv O, Bosch M, Percy A, Ojeda S. FXYD1, a Modulator of Na+,KATPase Activity, Facilitates Female Sexual Development by Maintaining Gonadotrophin Releasing Hormone Neuronal Excitability. J Neuroendocrinol. February 2009;21(2):102-122. PMID: 19187398, PMCID: PMC2934895
- Glaze DG, Percy AK, Motil KJ, Lane JB, Isaacs JS, Schultz RJ, Barrish JO, Neul JL, O'Brien WE, Smith EO. A study of the treatment of Rett syndrome with folate and betaine. J Child Neurol. May 2009;24(5):551-556. PMID: 19225139, PMCID: PMC2760386
- Larimore JL, Chapleau CA, Kudo S, Theibert A, Percy AK, Pozzo-Miller L. Bdnf overexpression in hippocampal neurons prevents dendritic atrophy caused by Rett-associated MECP2 mutations. Neurobiol Dis. May 2009;34(2):199-211. PMID: 19217433, PMCID: PMC2726722
- Motil KJ, Morrissey M, Caeg E, Barrish JO, Glaze DG. Gastrostomy placement improves height and weight gain in girls with Rett syndrome. J Pediatr Gastroenterol Nutr. Aug 2009;49(2):237-242. PMID: 19525868
- Chapleau CA, Calfa GD, Lane MC, Albertson AJ, Larimore JL, Kudo S, Armstrong DL, Percy AK, Pozzo-Miller L. Dendritic spine pathologies in hippocampal pyramidal neurons from Rett syndrome brain and after expression of Rett-associated MECP2 mutations. Neurobiol Dis. Aug 2009;35(2):219-233. PMID: 19442733, PMCID: PMC2722110
- Ramocki MB, Peters SU, Tavyev YJ, Zhang F, Carvalho CM, Schaaf CP, Richman R, Fang P, Glaze DG, Lupski JR, Zoghbi HY. Autism and other neuropsychiatric symptoms are prevalent in individuals with MeCP2 duplication syndrome. Ann Neurol. Dec 2009;66(6):771-782. PMID: 20035514, PMCID: PMC2801873
- Samaco RC, Mandel-Brehm C, Chao HT, et al. Loss of MeCP2 in aminergic neurons causes cellautonomous defects in neurotransmitter synthesis and specific behavioral abnormalities. Proc Natl Acad Sci USA. Dec 22 2009;106(51):21966-21971. PMID: 20007372, PMCID: PMC2799790
- Kirby RS, Lane JB, Childers J, Skinner SA, Annese F, Barrish JO, Glaze DG, Macleod P, Percy AK. Longevity in Rett syndrome: analysis of the North American Database. J Pediatr. Jan 2010;156(1):135-138 e131. PMID: 19772971, PMCID: PMC2794941
- Glaze DG, Percy AK, Skinner S, Motil KJ, Neul JL, Barrish JO, Lane JB, Geerts SP, Annese F, Graham J, McNair L, Lee HS. Epilepsy and the natural history of Rett syndrome. Neurology. Mar 16 2010;74(11):909-912. PMID: 20231667, PMCID: PMC2836870
- Percy AK, Lee HS, Neul JL, Lane JB, Skinner SA, Geerts SP, Annese F, Graham J, McNair L, Motil KJ, Barrish JO, Glaze DG. Profiling scoliosis in Rett syndrome. Pediatr Res. Apr 2010;67(4):435439. PMID: 20032810, PMCID: PMC2852102
- Percy AK, Neul JL, Glaze DG, Motil KJ, Skinner SA, Khwaja O, Lee HS, Lane JB, Barrish JO, Annese F, McNair L, Graham J, Barnes K. Rett syndrome diagnostic criteria: lessons from the Natural History Study. Ann Neurol. Dec 2010;68(6):951-955. PMID: 21104896, PMCID: PMC3021984
- Neul JL, Kaufmann WE, Glaze DG, Christodoulou J, Clarke AJ, Bahi-Buisson N, Leonard H, Bailey ME, Schanen NC, Zappella M, Renieri A, Huppke P, Percy AK. Rett syndrome: revised diagnostic criteria and nomenclature. Ann Neurol. Dec 2010;68(6):944-950. PMID: 21154482, PMCID: PMC3058521
- Percy AK. Rett syndrome: exploring the autism link. Arch Neurol. Aug 2011;68(8):985-989. PMID: 1825235, PMCID: PMC3674963
- Lane JB, Lee HS, Smith LW, et al. Clinical severity and quality of life in children and adolescents with Rett syndrome. Neurology. Nov 15 2011;77(20):1812-1818. PMID: 22013176, PMCID: PMC3233210
- Motil KJ, Barrish JO, Lane J, Geerts SP, Annese F, McNair L, Percy AK, Skinner SA, Neul JL, Glaze DG. Vitamin d deficiency is prevalent in girls and women with rett syndrome. J Pediatr Gastroenterol Nutr. Nov 2011;53(5):569-574. PMID: 21637127, PMCID: PMC3638258
- Khwaja OS, Sahin M. Translational research: Rett syndrome and tuberous sclerosis complex. Curr Opin Pediatr. Dec 2011;23(6):633-639. PMID: 21970827, PMCID: PMC3212611
- McCauley MD, Wang T, Mike E, Herrera J, Beavers DL, Huang TW, Ward CS, Skinner S, Percy AK, Glaze DG, Wehrens XH, Neul JL. Pathogenesis of lethal cardiac arrhythmias in Mecp2 mutant mice: implication for therapy in Rett syndrome. Sci Transl Med. Dec 14 2011;3(113):113ra125. PMID: 22174313, PMCID: PMC3633081
- Chapleau CA, Boggio EM, Calfa G, Percy AK, Giustetto M, Pozzo-Miller L. Hippocampal CA1 pyramidal neurons of Mecp2 mutant mice show a dendritic spine phenotype only in the presymptomatic stage. Neural Plast. 2012;2012:976164. PMID: 22919518, PMCID: PMC3418521
- Motil KJ, Caeg E, Barrish JO, Geerts S, Lane JB, Percy AK, Annese F, McNair L, Skinner SA, Lee HS, Neul JL, Glaze DG. Gastrointestinal and nutritional problems occur frequently throughout life in girls and women with rett syndrome. J Pediatr Gastroenterol Nutr. Sep 2012;55(3):292-298. PMID: 22331013, PMCID: PMC3393805
- Bebbington A, Downs J, Percy A, Pineda M, Zeev BB, Bahi-Buisson N, Leonard H. The phenotype associated with a large deletion on MECP2. Eur J Hum Genet. Sep 2012;20(9):921-927. PMID: 22473088, PMCID: PMC3421119
- Tarquinio DC, Motil KJ, Hou W, Lee HS, Glaze DG, Skinner SA, Neul JL, Annese F, McNair L, Barrish JO, Geerts SP, Lane JB, Percy AK. Growth failure and outcome in Rett syndrome: specific growth references. Neurology. Oct 16 2012;79(16):1653-1661. PMID: 23035069, PMCID: PMC3468773
- Chapleau CA, Lane J, Larimore J, Li W, Pozzo-Miller L, Percy AK. Recent Progress in Rett Syndrome and MeCP2 Dysfunction: Assessment of Potential Treatment Options. Future Neurology. Jan 1 2013;8(1). PMID: 24348096, PMCID: PMC3859379
- Chapleau CA, Lane J, Kirwin SM, et al. Detection of rarely identified multiple mutations in MECP2 gene do not contribute to enhanced severity in Rett syndrome. Am J Med Genet A. Jul 2013;161A(7):1638-1646. PMID: 23696494, PMCID: PMC3689857
- Leonard H, Ravikumara M, Baikie G, et al. Assessment and management of nutrition and growth in Rett syndrome. J Pediatr Gastroenterol Nutr. Oct 2013;57(4):451-460. PMID: 24084372, PMCID: PMC3906202
- Percy AK. Neuroscience. Path to treat Rett syndrome. Science. Oct 18 2013;342(6156):318-320. PMID: 24136956
- Chapleau CA, Lane J, Pozzo-Miller L, Percy AK. Evaluation of current pharmacological treatment options in the management of Rett syndrome: from the present to future therapeutic alternatives. Current Clinical Pharmacology. Nov 2013;8(4):358-369. PMID: 24050745, PMCID: PMC3789853
- Neul JL, Lane JB, Lee HS, et al. Developmental delay in Rett syndrome: data from the natural history study. J Neurodev Disord. 2014;6(1):20. PMID: 25071871, PMCID: PMC4112822
- Percy A. The American history of Rett syndrome. Pediatr Neurol. Jan 2014;50(1):1-3. PMID: 24200039, PMCID: PMC3874243
- Cuddapah VA, Pillai RB, Shekar KV, et al. Methyl-CpG-binding protein 2 (MECP2) mutation type is associated with disease severity in Rett syndrome. J Med Genet. Mar 2014;51(3):152-158. PMID: 24399845, PMCID: PMC4403764
- Kalman LV, Tarleton JC, Percy AK, et al. Development of a Genomic DNA Reference Material Panel for Rett Syndrome (MECP2-Related Disorders) Genetic Testing. J Mol Diagn. Mar 2014;16(2):273-279. PMID: 24508304, PMCID: PMC3937532
- Suter B, Treadwell-Deering D, Zoghbi HY, Glaze DG, Neul JL. Brief report: MECP2 mutations in people without Rett syndrome. J Autism Dev Disord. Mar 2014;44(3):703-711. PMID: 23921973, PMCID: PMC3880396
- Pinto AL, Fernandez IS, Peters JM, et al. Localization of sleep spindles, k-complexes, and vertex waves with subdural electrodes in children. J Clin Neurophysiol. Aug 2014;31(4):367-374. PMID: 25083850
- Killian JT, Lane JB, Cutter GR, et al. Pubertal development in Rett syndrome deviates from typical females. Pediatr Neurol. Dec 2014;51(6):769-775. PMID: 25283752, PMCID: PMC4254166
- Peters SU, Gordon RL, Key AP. Induced gamma oscillations differentiate familiar and novel voices in children with MECP2 duplication and Rett syndromes. J Child Neurol. Feb 2015;30(2):145-152. PMID: 24776956, PMCID: PMC4406405
- Tarquinio DC, Hou W, Neul JL, et al. Age of diagnosis in rett syndrome: patterns of recognition among diagnosticians and risk factors for late diagnosis. Pediatr Neurol. Jun 2015;52(6):585-591 e582. PMID: 25801175, PMCID: PMC4442062
- Tarquinio DC, Hou W, Neul JL, et al. The Changing Face of Survival in Rett Syndrome and MECP2-Related Disorders. Pediatr Neurol. Nov 2015;53(5):402-11. PMID: 26278631, PMCID: PMC4609589
- Pozzo-Miller L, Pati S, Percy AK. Rett Syndrome: Reaching for Clinical Trials. Neurotherapeutics: the Journal of the American Society for Experimental NeuroTherapeutics. Jul 2015;12(3):631640. PMID: 25861995, PMCID: PMC4489949
- Olson HE, Tambunan D, LaCoursiere C, et al. Mutations in epilepsy and intellectual disability genes in patients with features of Rett syndrome. Am J Med Genet A. Sep 2015;167A(9):2017-2025. PMID: 25914188, PMCID: PMC5722031
- Neul JL, Glaze DG, Percy AK, et al. Improving Treatment Trial Outcomes for Rett Syndrome: The Development of Rett-specific Anchors for the Clinical Global Impression Scale. J Child Neurol. Nov 2015;30(13):1743-1748. PMID: 25895911, PMCID: PMC4610825
- Merkel PA, Manion M, Gopal-Srivastava R, et al. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66. PMID: 27194034, PMCID: PMC4870759
- Percy AK. Progress in Rett Syndrome: from discovery to clinical trials. Wien Med Wochenschr. 2016;166(11-12):325-332. PMID: 27491553, PMCID: PMC5005392
- Sheikh TI, Ausio J, Faghfoury H, et al. From Function to Phenotype: Impaired DNA Binding and Clustering Correlates with Clinical Severity in Males with Missense Mutations in MECP2. Scientific Reports. 2016;6:38590. PMID: 27929079, PMCID: PMC5144150
- Ward CS, Huang TW, Herrera JA, et al. Loss of MeCP2 Causes Urological Dysfunction and Contributes to Death by Kidney Failure in Mouse Models of Rett Syndrome. PLoS ONE. 2016;11(11):e0165550. PMID: 27828991, PMCID: PMC5102405
- Killian JT, Jr., Lane JB, Lee HS, et al. Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors. Pediatr Neurol. Jan 11 2016. PMID: 26995066, PMCID: PMC4899118
- Sajan SA, Jhangiani SN, Muzny DM, et al. Enrichment of mutations in chromatin regulators in people with Rett syndrome lacking mutations in MECP2. Genet Med. May 12 2016. PMID: 27171548, PMCID: PMC5107176
- Dy ME, Waugh JL, Sharma N, et al. Defining Hand Stereotypies in Rett Syndrome: A Movement Disorders Perspective. Pediatr Neurol. 2017;75:91-95. PMID: 28838622, PMCID: PMC5624791
- Killian JT, Lane JB, Lee HS, et al. Scoliosis in Rett Syndrome: Progression, Comorbidities, and Predictors. Pediatr Neurol. 2017;70:20-25. PMID: 28347601, PMCID: PMC5461984
- Lane JB, Salter AR, Jones NE, et al. Assessment of Caregiver Inventory for Rett Syndrome. J Autism Dev Disord. 2017;47(4):1102-1112. PMID: 28132121, PMCID: PMC5357458
- Tarquinio DC, Hou W, Berg A, et al. Longitudinal course of epilepsy in Rett syndrome and related disorders. Brain. 2017;140(Pt 2):306-318. PMID: 28007990, PMCID: PMC5278305
- Gold JA, Mahmoud R, Cassidy SB, Kimonis V. Comparison of perinatal factors in deletion versus uniparental disomy in Prader-Willi syndrome. Am J Med Genet A. 2018;176(5):1161-1165. PMID: 29681103, PMCID: PMC5918292
- Mahmoud R, Singh P, Weiss L, et al. Newborn screening for Prader-Willi syndrome is feasible: Early diagnosis for better outcomes. Am J Med Genet A. 2018. PMID: 30556641
- Sadhwani A, Sanjana NE, Willen JM, et al. Two Angelman families with unusually advanced neurodevelopment carry a start codon variant in the most highly expressed UBE3A isoform. Am J Med Genet A. 2018. PMID: 29737008
- Tan WH, Bird LM, Sadhwani A, et al. A randomized controlled trial of levodopa in patients with Angelman syndrome. Am J Med Genet A. 2018;176(5):1099-1107. PMID: 28944563, PMCID: PMC5867193
- Tarquinio DC, Hou W, Neul JL, et al. The course of awake breathing disturbances across the lifespan in Rett syndrome. Brain Dev. 2018. PMID: 29657083
- Buchanan CB, Stallworth JL, Scott AE, et al. Behavioral profiles in Rett syndrome: Data from the natural history study. Brain Dev. 2019;41(2):123-134. PMID: 30217666, PMCID: PMC6392009
- Khan N, Cabo R, Tan WH, Tayag R, Bird LM. Healthcare burden among individuals with Angelman syndrome: Findings from the Angelman Syndrome Natural History Study. Molecular Genetics & Genomic Medicine. 2019:e734. PMID: 31090212
- Motil KJ, Lane JB, Barrish JO, et al. Biliary Tract Disease in Girls and Young Women with Rett Syndrome. J Pediatr Gastroenterol Nutr. 2019. PMID: 30664568
- Neul JL, Benke TA, Marsh ED, et al. The array of clinical phenotypes of males with mutations in Methyl-CpG binding protein 2. Am J Med Genet B Neuropsychiatr Genet. 2019;180(1):55-67. PMID: 30536762
- Sadhwani A, Willen JM, LaVallee N, et al. Maladaptive behaviors in individuals with Angelman syndrome. Am J Med Genet A. 2019;179(6):983-992. PMID: 30942555
Salivary Gland Carcinomas Consortium
Journal Articles
- Santarpia L, Myers JN, Sherman SI, Trimarchi F, Clayman GL, El-Naggar AK. Genetic alterations in the RAS/RAF/mitogen-activated protein kinase and phosphatidylinositol 3-kinase/Akt signaling pathways in the follicular variant of papillary thyroid carcinoma. Cancer. Jun 15 2010;116(12):2974-2983. PMID: 20564403
- Mitani Y, Li J, Rao PH, Zhao YJ, Bell D, Lippman SM, Weber RS, Caulin C, El-Naggar AK. Comprehensive analysis of the MYB-NFIB gene fusion in salivary adenoid cystic carcinoma: Incidence, variability, and clinicopathologic significance. Clin Cancer Res. Oct 1 2010;16(19):4722-4731. PMID: 20702610
- Su X, Chakravarti D, Cho MS, Liu L, Gi YJ, Lin YL, Leung ML, El-Naggar A, Creighton CJ, Suraokar MB, Wistuba I, Flores ER. TAp63 suppresses metastasis through coordinate regulation of Dicer and miRNAs. Nature. Oct 21 2010;467(7318):986-990. PMID: 20962848, PMCID: PMC3055799
- Bell D, Roberts D, Kies M, Rao P, Weber RS, El-Naggar AK. Cell type-dependent biomarker expression in adenoid cystic carcinoma: Biologic and therapeutic implications. Cancer. Dec 15 2010;116(24):5749-5756. PMID: 20824717, PMCID: PMC2998592
- Wang Y, Suh YA, Fuller MY, Jackson JG, Xiong S, Terzian T, Quintas-Cardama A, Bankson JA, El Naggar AK, Lozano G. Restoring expression of wild-type p53 suppresses tumor growth but does not cause tumor regression in mice with a p53 missense mutation. J Clin Invest. Mar 1 2011;121(3):893-904. PMID: 21285512, PMCID: PMC3049366
- Mitani Y, Li J, Weber RS, Lippman SL, Flores ER, Caulin C, El-Naggar AK. Expression and regulation of the DeltaN and TAp63 isoforms in salivary gland tumorigenesis clinical and experimental findings. Am J Pathol. Jul 2011;179(1):391-399. PMID: 21703418, PMCID: PMC3123859
- Bell D, Roberts D, Karpowicz M, Hanna EY, Weber RS, El-Naggar AK. Clinical significance of Myb protein and downstream target genes in salivary adenoid cystic carcinoma. Cancer Biol Ther. Oct 1 2011;12(7):569-573.PMID: 21785271, PMCID: PMC3218383
- Mitani Y, Rao PH, Futreal PA, Roberts DB, Stephens PJ, Zhao YJ, Zhang L, Mitani M, Weber RS, Lippman SM, Caulin C, El-Naggar AK. Novel chromosomal rearrangements and break points at the t(6;9) in salivary adenoid cystic carcinoma: association with MYB-NFIB chimeric fusion, MYB expression, and clinical outcome. Clin Cancer Res. Nov 15 2011;17(22):7003-7014. PMID: 21976542, PMCID: PMC3225955
- Jin L, Xu L, Song X, Wei Q, Sturgis EM, Li G. Genetic variation in MDM2 and p14ARF and susceptibility to salivary gland carcinoma. PLoS ONE. 2012;7(11):e49361. PMID: 23145162, PMCID: PMC3492289
- Xu L, Doan PC, Wei Q, Liu Y, Li G, Sturgis EM. Association of BRCA1 functional single nucleotide polymorphisms with risk of differentiated thyroid carcinoma. Thyroid. Jan 2012;22(1):35-43. PMID: 22136207, PMCID: PMC3263304
- Santarpia L, Lippman SM, El-Naggar AK. Targeting the MAPK-RAS-RAF signaling pathway in cancer therapy. Expert Opin Ther Targets. Jan 2012;16(1):103-119. PMID: 22239440, PMCID: PMC3457779
- Sen B, Peng S, Woods DM, et al. STAT5A-mediated SOCS2 expression regulates Jak2 and STAT3 activity following c-Src inhibition in head and neck squamous carcinoma. Clin Cancer Res. Jan 1 2012;18(1):127-139. PMID: 22090359, PMCID: PMC3251692
- Bell D, Bell A, Roberts D, Weber RS, El-Naggar AK. Developmental transcription factor EN1--a novel biomarker in human salivary gland adenoid cystic carcinoma. Cancer. Mar 1 2012;118(5):1288-1292. PMID: 21800291, PMCID: PMC3208084
- Lewis CM, Glisson BS, Feng L, et al. A phase II study of gefitinib for aggressive cutaneous squamous cell carcinoma of the head and neck. Clin Cancer Res. Mar 1 2012;18(5):1435-1446. PMID: 22261807
- Thariat J, Ang KK, Allen PK, et al. Prediction of neck dissection requirement after definitive radiotherapy for head-and-neck squamous cell carcinoma. Int J Radiat Oncol Biol Phys. Mar 1 2012;82(3):e367-374. PMID: 22284033
- Xu L, Li G, Wei Q, El-Naggar AK, Sturgis EM. Family history of cancer and risk of sporadic differentiated thyroid carcinoma. Cancer. Mar 1 2012;118(5):1228-1235. PMID: 21800288, PMCID: PMC3208119
- El-Naggar AK, Westra WH. p16 expression as a surrogate marker for HPV-related oropharyngeal carcinoma: a guide for interpretative relevance and consistency. Head Neck. Apr 2012;34(4):459-461. PMID: 22180304
- Jackson JG, Pant V, Li Q, Chang LL, Quintas-Cardama A, Garza D, Tavana O, Yang P, Manshouri T, Li Y, El-Naggar AK, Lozano G. p53-mediated senescence impairs the apoptotic response to chemotherapy and clinical outcome in breast cancer. Cancer Cell. Jun 12 2012;21(6):793-806. PMID: 22698404, PMCID: PMC3376352
- Adelstein DJ, Koyfman SA, El-Naggar AK, Hanna EY. Biology and management of salivary gland cancers. Semin Radiat Oncol. Jul 2012;22(3):245-253. PMID:22687949
- Li N, Xu L, Zhao H, El-Naggar AK, Sturgis EM. A comparison of the demographics, clinical features, and survival of patients with adenoid cystic carcinoma of major and minor salivary glands versus less common sites within the Surveillance, Epidemiology, and End Results registry. Cancer. Aug 15 2012;118(16):3945-3953. PMID: 22179977, PMCID: PMC3412946
- McHugh CH, Roberts DB, El-Naggar AK, et al. Prognostic factors in mucoepidermoid carcinoma of the salivary glands. Cancer. Aug 15 2012;118(16):3928-3936. PMID: 22180391
- Kies MS, Boatright DH, Li G, et al. Phase II trial of induction chemotherapy followed by surgery for squamous cell carcinoma of the oral tongue in young adults. Head Neck. Sep 2012;34(9):1255-1262. PMID: 22009800
- Xu L, Doan PC, Wei Q, Li G, Sturgis EM. Functional single-nucleotide polymorphisms in the BRCA1 gene and risk of salivary gland carcinoma. Oral Oncol. Sep 2012;48(9):842-847. PMID: 22503699, PMCID: PMC3408797
- Xu L, Mugartegui L, Li G, Sarlis NJ, Wei Q, Zafereo ME, Sturgis EM. Functional polymorphisms in the insulin-like binding protein-3 gene may modulate susceptibility to differentiated thyroid carcinoma in Caucasian Americans. Mol Carcinog. Oct 2012;51 Suppl 1:E158-167. PMID: 22415807, PMCID: PMC3473095
- Mitani Y, Roberts DB, Fatani H, et al. MicroRNA profiling of salivary adenoid cystic carcinoma: association of miR-17-92 upregulation with poor outcome. PLoS ONE. 2013;8(6):e66778. PMID: 3825564, PMCID: PMC3692530
- Bell D, El-Naggar AK. Molecular heterogeneity in mucoepidermoid carcinoma: conceptual and practical implications. Head and Neck Pathology. Mar 2013;7(1):23-27. PMID: 23459841, PMCID: PMC3597160
- Sano D, Gule MK, Rosenthal DI, et al. Early postoperative epidermal growth factor receptor inhibition: safety and effectiveness in inhibiting microscopic residual of oral squamous cell carcinoma in vivo. Head Neck. Mar 2013;35(3):321-328. PMID: 22367702, PMCID: PMC3836367
- Guan X, Sturgis EM, Song X, et al. Pre-microRNA variants predict HPV16-positive tumors and survival in patients with squamous cell carcinoma of the oropharynx. Cancer Lett. Apr 28 2013;330(2):233-240. PMID: 23219900, PMCID: PMC3563870
- Bell D, J NM, Rao PH, El-Naggar AK. t(3;8) as the sole chromosomal abnormality in a myoepithelial carcinoma ex pleomorphic adenoma: a putative progression event. Head Neck. Jun 2013;35(6):E181-183. PMID: 22287457
- Ow TJ, Hanna EY, Roberts DB, et al. Optimization of long-term outcomes for patients with esthesioneuroblastoma. Head Neck. Jun 18 2013. PMID: 23780581
- Zhang L, Mitani Y, Caulin C, et al. Detailed genome-wide SNP analysis of major salivary carcinomas localizes subtype-specific chromosome sites and oncogenes of potential clinical significance. Am J Pathol. Jun 2013;182(6):2048-2057. PMID: 23583282, PMCID: PMC3668022
- Pickering CR, Zhang J, Yoo SY, et al. Integrative genomic characterization of oral squamous cell carcinoma identifies frequent somatic drivers. Cancer Discovery. Jul 2013;3(7):770-781. PMID: 23619168, PMCID: PMC3858325
- Stephens PJ, Davies HR, Mitani Y, et al. Whole exome sequencing of adenoid cystic carcinoma. J Clin Invest. Jul 1 2013;123(7):2965-2968. PMID: 23778141
- Ivanov SV, Panaccione A, Nonaka D, et al. Diagnostic SOX10 gene signatures in salivary adenoid cystic and breast basal-like carcinomas. Br J Cancer. Jul 23 2013;109(2):444-451. PMID: 23799842, PMCID: PMC3721393
- Gillenwater AM, Frank SJ, Fatani H, El-Naggar AK. Primary intestinal-like adenocarcinoma of major salivary glands: 2 instances of previously undocumented phenotype. Head Neck. Aug 2013;35(8):E234-236. PMID: 23108630
- Liu X, Bishop J, Shan Y, et al. Highly prevalent TERT promoter mutations in aggressive thyroid cancers. Endocr Relat Cancer. Aug 2013;20(4):603-610. PMID: 23766237
- Ivanov SV, Panaccione A, Brown B, et al. TrkC signaling is activated in adenoid cystic carcinoma and requires NT-3 to stimulate invasive behavior. Oncogene. Aug 8 2013;32(32):3698-3710. PMID: 23027130
- Bell D, Holsinger FC, Ordonez N, El-Naggar AK. Intestinal-type adenocarcinoma of the larynx: Report of a rare aggressive phenotype and discussion of histogenesis. Head Neck. Aug 28 2013. PMID: 24038722
- Sandulache VC, Ow TJ, Daram SP, et al. Residual nodal disease in patients with advanced-stage oropharyngeal squamous cell carcinoma treated with definitive radiation therapy and posttreatment neck dissection: Association with locoregional recurrence, distant metastasis, and decreased survival. Head Neck. Oct 2013;35(10):1454-1460. PMID: 23018868
- Gelbard A, Hale KS, Takahashi Y, et al. Molecular profiling of sinonasal undifferentiated carcinoma. Head Neck. Jan 2014;36(1):15-21. PMID: 23633104
- Bell D, Hanna EY, Miele L, Roberts D, Weber RS, El-Naggar AK. Expression and significance of notch signaling pathway in salivary adenoid cystic carcinoma. Ann Diagn Pathol. Feb 2014;18(1):10-13. PMID: 24238845
- Reitzel LR, Nguyen N, Li N, Xu L, Regan SD, Sturgis EM. Trends in thyroid cancer incidence in Texas from 1995 to 2008 by socioeconomic status and race/ethnicity. Thyroid. Mar 2014;24(3):556-567. PMID: 24063701, PMCID: PMC3949437
- Mitani Y, Rao PH, Maity SN, et al. Alterations associated with androgen receptor gene activation in salivary duct carcinoma of both sexes: potential therapeutic ramifications. Clin Cancer Res. Dec 15 2014;20(24):6570-6581. PMID: 25316813, PMCID: PMC4268116
- Gao R, Cao C, Zhang M, et al. A unifying gene signature for adenoid cystic cancer identifies parallel MYB-dependent and MYB-independent therapeutic targets. Oncotarget. Dec 30 2014;5(24):12528-12542. PMID: 25587024, PMCID: PMC4350357
- Wang Z, Ling S, Rettig E, et al. Epigenetic screening of salivary gland mucoepidermoid carcinoma identifies hypomethylation of CLIC3 as a common alteration. Oral Oncol. 2015;51(12):1120-1125. PMID: 26490796, PMCID: PMC4663116
- Xu L, Tang H, El-Naggar AK, Wei P, Sturgis EM. Genetic variants in DNA double-strand break repair genes and risk of salivary gland carcinoma: a case-control study. PLoS ONE. 2015;10(6):e0128753. PMID: 26035306, PMCID: PMC4452711
- Xu L, Tang H, Chen DW, El-Naggar AK, Wei P, Sturgis EM. Genome-wide association study identifies common genetic variants associated with salivary gland carcinoma and its subtypes. Cancer. Jul 15 2015;121(14):2367-2374. PMID: 25823930; PMCID: PMC4564998
Sterol and Isoprenoid Diseases Consortium
Book Chapters
- He M, Smith L, Vockley J. SC4MOL deficiency. In: Valle D, Beaudet A, Vogelstein B, et al., eds. Online Metabolic and Molecular Bases of Inherited Disease. New York, NY: McGraw-Hill Global Education Holdings, LLC; 2014.
Journal Articles
- Merkens LS, Wassif C, Healy K, et al. Smith-Lemli-Opitz syndrome and inborn errors of cholesterol synthesis: summary of the 2007 SLO/RSH Foundation scientific conference sponsored by the National Institutes of Health. Genet Med. May 2009;11(5):359-364. PMID: 19452638, PMCID: PMC2884390
- DeBarber AE, Connor WE, Pappu AS, Merkens LS, Steiner RD. ESI-MS/MS quantification of 7alpha-hydroxy-4-cholesten-3-one facilitates rapid, convenient diagnostic testing for cerebrotendinous xanthomatosis. Clin Chim Acta. Jan 2010;411(1-2):43-48. PMID: 19808031
- McLarren KW, Severson TM, du Souich C, Stockton DW, Kratz LE, Cunningham D, Hendson G, Morin RD, Wu D, Paul JE, An J, Nelson TN, Chou A, DeBarber AE, Merkens LS, Michaud JL, Waters PJ, Yin J, McGillivray B, Demos M, Rouleau GA, Grzeschik KH, Smith R, Tarpey PS, Shears D, Schwartz CE, Gecz J, Stratton MR, Arbour L, Hurlburt J, Van Allen MI, Herman GE, Zhao Y, Moore R, Kelley RI, Jones SJ, Steiner RD, Raymond FL, Marra MA, Boerkoel CF. Hypomorphic temperature-sensitive alleles of NSDHL cause CK syndrome. Am J Hum Genet. Dec 10 2010;87(6):905-914. PMID: 21129721, PMCID: PMC2997364
- DeBarber AE, Eroglu Y, Merkens LS, Pappu AS, Steiner RD. Smith-Lemli-Opitz syndrome. Expert Rev Mol Med. 2011;13:e24. PMID: 21777499, PMCID: PMC3366105
- He M, Kratz LE, Michel JJ, Vallejo AN, Ferris L, Kelley RI, Hoover JJ, Jukic D, Gibson KM, Wolfe LA, Ramachandran D, Zwick ME, Vockley J. Mutations in the human SC4MOL gene encoding a methyl sterol oxidase cause psoriasiform dermatitis, microcephaly, and developmental delay. J Clin Invest. Mar 1 2011;121(3):976-984. PMID: 21285510, PMCID: PMC3049385
- DeBarber AE, Sandlers Y, Pappu AS, Merkens LS, Duell PB, Lear SR, Erickson SK, Steiner RD. Profiling sterols in cerebrotendinous xanthomatosis: utility of Girard derivatization and high resolution exact mass LC-ESI-MS(n) analysis. J Chromatogr B Analyt Technol Biomed Life Sci. May 15 2011;879(17-18):1384-1392. PMID: 21168372, PMCID: PMC3326078
- Steiner LA, Ehrenkranz RA, Peterec SM, Steiner RD, Reyes-Mugica M, Gallagher PG. Perinatal onset mevalonate kinase deficiency. Pediatr Dev Pathol. Jul-Aug 2011;14(4):301-306. PMID: 21425920
- Monson DM, DeBarber AE, Bock CJ, Anadiotis G, Merkens LS, Steiner RD, Stout AU. Cerebrotendinous xanthomatosis: a treatable disease with juvenile cataracts as a presenting sign. Arch Ophthalmol. Aug 2011;129(8):1087-1088. PMID: 21825196, PMCID: PMC3366103
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