Consortium Spotlight: Advancing Discoveries in the Leukodystrophies Dakota Campbell Tue, 08/23/2022 - 09:23
Global Leukodystrophy Initiative Clinical Trials Network logo

The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, clinicians, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies—a group of rare, primarily inherited neurological disorders. Here, program manager Omar Sherbini, MPH, shares the history of the consortium, current research, and future plans.

Consortium Spotlight: Advancing Discoveries in Mitochondrial Diseases Dakota Campbell Wed, 06/01/2022 - 14:59
North American Mitochondrial Disease Consortium (NAMDC) logo

The North American Mitochondrial Disease Consortium (NAMDC) was established to create a network of clinicians and clinical investigators in North America who follow sizeable numbers of patients with mitochondrial diseases and are involved or interested in mitochondrial research. Here, Principal Investigator (PI) Michio Hirano, MD, shares the history of the consortium, current research, and future plans.

Consortium Spotlight: Advancing Discoveries in Urea Cycle Disorders Dakota Campbell Fri, 12/03/2021 - 10:11
Urea Cycle Disorders Consortium logo

The Urea Cycle Disorders Consortium (UCDC), now in its fourth cycle of funding, is one of the original Rare Diseases Clinical Research Network (RDCRN) consortia. When originally established, the UCDC had five sites; it is now an international network of 16 academic centers (13 in the US, one in Canada, and two in Europe) with 38 faculty investigators and 25 research staff members providing state-of-the-art care and conducting innovative clinical research in urea cycle disorders (UCD).

Consortium Spotlight: Advancing Discoveries in Brittle Bone Disorders Dakota Campbell Wed, 11/03/2021 - 11:58
Members of the Brittle Bone Disorders Consortium

The Brittle Bone Disorders Consortium (BBDC) brings together physicians, researchers, and educators to learn more about osteogenesis imperfecta (OI), a genetic disorder that mainly affects the development of the bones. The goal is to develop new and better treatments for patients with OI. Here, principal investigator Brendan Lee, MD, PhD, and Vernon Sutton, MD, share the history of the consortium, current research, and future plans.