Current RDCRN Consortia
The Rare Diseases Clinical Research Network (RDCRN) is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.
About the Current RDCRN Consortia
Currently, the RDCRN consists of 20 individual clinical research consortia and a Data Management and Coordinating Center (DMCC). Each consortium focuses on at least three related rare diseases or conditions, participates in multisite studies and actively involves patient advocacy groups as research partners. The DMCC enables uniform high-quality data collection and analysis, and facilitates information sharing across the network. This robust data source helps scientists better understand the common elements of rare diseases so they may apply that knowledge to improving diagnosis and treatment for these conditions.
On Oct. 3, 2019, NIH announced awards to both existing and new RDCRN consortia.
RDCRN Data Management and Coordinating Center (DMCC)
Eileen King, Ph.D., Maurizio Macaluso, M.D., DrPH, FACE and Michael Wagner, Ph.D.
Cincinnati Children’s Hospital Medical Center
Learn more about this project in NIH RePORTER.
Brain Vascular Malformation Consortium (BVMC)
Helen Kim, M.P.H., Ph.D.
University of California, San Francisco
Learn more about this project in NIH RePORTER.
Brittle Bone Disorders Consortium (BBDC)
Brendan Lee, M.D., Ph.D.
Baylor College of Medicine, Houston
Learn more about this project in NIH RePORTER.
Clinical Research in Amyotrophic Lateral Sclerosis and Related Disorders for Therapeutic Development (CReATe)
Michael Benatar, MD., Ph.D.
University of Miami Miller School of Medicine, Florida
Learn more about this project in NIH RePORTER.
Congenital and Perinatal Infections Consortium (CPIC)
David Kimberlin, M.D.
University of Alabama at Birmingham
Learn more about this project in NIH RePORTER.
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
Marc E. Rothenberg, M.D., Ph.D.
Cincinnati Children’s Hospital Medical Center
Learn more about this project in NIH RePORTER.
Developmental Synaptopathies Consortium (DSC)
Mustafa Sahin, M.D., Ph.D.
Boston Children’s Hospital
Learn more about this project in NIH RePORTER.
Dystonia Coalition
Hyder A. Jinnah, M.D., Ph.D.
Emory University, Atlanta
Learn more about this project in NIH RePORTER.
Frontiers in Congenital Disorders of Glycosylation (FCDGC)
Eva Morava-Kozicz, M.D., Ph.D.
Mayo Clinic, Rochester
Learn more about this project in NIH RePORTER.
Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)
Stephanie Davis, M.D. – The University of North Carolina at Chapel Hill
Thomas Ferkol, M.D. – Washington University in St. Louis
Learn more about this project in NIH RePORTER.
Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN)
Adeline L. Vanderver, M.D. – Children's Hospital of Philadelphia
S. Ali Fatemi, M.D., M.B.A. – Kennedy Krieger Institute
Florian S. Eichler, M.D. – Massachusetts General Hospital
Learn more about this project in NIH RePORTER.
Inherited Neuropathy Consortium (INC)
Michael E. Shy, M.D.
University of Iowa, Iowa City
Learn more about this project in NIH RePORTER.
Lysosomal Disease Network (LDN)
Chester B. Whitley, M.D., Ph.D.
University of Minnesota, Minneapolis
Learn more about this project in NIH RePORTER.
Myasthenia Gravis Rare Disease Network (MGNet)
Henry J. Kaminski, M.D.
The George Washington University, Washington, D.C.
Learn more about this project in NIH RePORTER.
Nephrotic Syndrome Study Network (NEPTUNE)
Matthias Kretzler, M.D.
University of Michigan, Ann Arbor
Learn more about this project in NIH RePORTER.
North American Mitochondrial Disease Consortium (NAMDC)
Michio Hirano, M.D.
Columbia University, New York
Learn more about this project in NIH RePORTER.
Phenylalanine Families and Researchers Exploring Evidence (PHE FREE)
Cary Harding, M.D.
Oregon Health & Science University, Portland
Learn more about this project in NIH RePORTER.
Porphyrias Consortium (PC)
Robert J. Desnick, Ph.D., M.D.
Icahn School of Medicine at Mount Sinai, New York
Learn more about this project in NIH RePORTER.
Primary Immune Deficiency Treatment Consortium (PIDTC)
Jennifer M. Puck, M.D. – University of California, San Francisco
Donald B. Kohn, M.D. – University of California, Los Angeles
Learn more about this project in NIH RePORTER.
Urea Cycle Disorders Consortium (UCDC)
Andrea L. Gropman, M.D., FAAP, FACMG
Children's National Medical Center, Washington D.C
Learn more about this project in NIH RePORTER.
Vasculitis Clinical Research Consortium (VCRC)
Peter A. Merkel, M.D., M.P.H.
University of Pennsylvania, Philadelphia