In the spring of 2013, a survey was circulated to the RDCRN Consortium Principal Investigators (PIs) and Patient Advocacy Group (PAG) representatives of their consortium to determine how PAGs and their affiliated consortia interacted and whether this interaction was interpreted as positive or negative by both PAG representatives and Consortium PIs. A total of 28 PAG representatives, each from a different PAG, and all 17 RDCRN Consortium PIs completed the survey. A working group comprised of members from the RDCRN Strategic Planning Committee wrote an article entitled “The partnership of patient advocacy groups and clinical investigators in the Rare Diseases Clinical Research Network” based on the data collected. Sixteen of 17 Consortium PIs (94%) and 25 of the 28 PAGs who responded to the survey (89%) reported that PAGs participate in protocol reviews, study design, Consortium conference calls, attend Consortium meetings, or help with patient recruitment. This article shows that PAGs are integral partners of the RDCRN, assisting with recruitment for protocols, study design, and training programs. The results of this survey indicate that the PAG-investigator partnership has had a strongly positive impact.
This article was published in the Orphanet Journal of Rare Diseases in May 2016. The complete article can be accessed via PubMed Central: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4870759/.
