NIH Establishes Rare Diseases Clinical Research Network
NIH’s Rare Diseases Clinical Research Network
In order to increase collaboration and critical resources related to diagnosing and treating rare diseases, the National Institutes of Health (NIH) created the Rare Diseases Clinical Research Network in November 2003. With $51 million in grant funding over five years from several NIH components, the Network consisted of seven consortia along with The Data and Technology Coordinating Center (DTCC). In September 2004, NIH expanded the network by adding three additional consortia and increased support to the DTCC, bringing overall funding to $71 million.
The following 10 consortia and the DTCC now comprise the Network:
• Baylor College of Medicine, Houston, TX — Angelman, Rett, & Prader-Willi Syndromes Consortium — Dr. Arthur L. Beaudet
• Boston University School of Medicine, Boston, MA — Vasculitis Clinical Research Consortium — Dr. Peter A. Merkel
• Childrens Hospital, Denver, CO — Cholestatic Liver Disease Consortium (CLiC) — Dr. Ronald J. Sokol
• Children's Hospital Medical Center, Cincinnati, OH — Rare Lung Diseases Consortium — Dr. Bruce C. Trapnell
• Children's National Medical Center, Washington, DC —Urea Cycle Disorders Consortium — Dr. Mark L. Batshaw
• Cleveland Clinic Foundation, Cleveland, OH — Bone Marrow Failure Disease Consortium — Dr. Jaroslaw P. Maciejewski
• Duke University School of Medicine, Durham, NC — Rare Thrombotic Diseases Consortium — Dr. Thomas L. Ortel
• University of North Carolina at Chapel Hill, NC — Genetic Diseases of Mucociliary Clearance Consortium — Dr. Michael R. Knowles
• University of Rochester, Rochester, NY — Consortium for Clinical Investigations of Neurological Channelopathies (CINCH) — Dr. Robert C. Griggs
• Mount Sinai School of Medicine, New York, NY — Rare Genetic Steroid Disorders Consortium — Dr. Maria I. New
• Pediatrics Epidemiology Center, University of South Florida, Tampa, FL — The Data and Technology Coordinating Center (DTCC) — Dr. Jeffrey P. Krischer
The consortia within the Network represent about 50 rare diseases. Additional information on the consortia can be found on the Rare Diseases Clinical Research Network Web site.
The Network responds to the Rare Disease Act of 2002, which directed NIH to support "regional centers of excellence for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for rare diseases."
* The Network is funded by the following NIH components:
▪ Office of Rare Diseases
▪ National Center for Research Resources
▪ National Institute of Child Health and Human Development
▪ National Institute of Neurological Disorders and Stroke
▪ National Institute of Arthritis and Musculoskeletal and Skin Diseases
▪ National Institute of Diabetes and Digestive and Kidney Diseases
▪ National Heart, Lung, and Blood Institute
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