Rare Diseases Clinical Research Network (RDCRN) consisting of Rare Diseases Clinical Research Consortia (RDCRC) and a
Data Management and Coordinating Center (DMCC)

Background

On February 27, 2003, ORDR in response to the Rare Diseases Act of 2002, P.L. 107-280, released a Request for Applications (RFA) for a Rare Diseases Clinical Research Network together with the National Center for Research Resources (NCRR)/General Clinical Research Consortium (GCRC) Program and in collaboration with other NIH Institutes. ORDR, NCRR, and the National Institute of Child Health and Human Development (NICHD), National Institute of Neurological Disorders and Stroke (NINDS), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the National Heart, Lung, and Blood Institute (NHLBI), all components of the NIH, funded ten rare diseases clinical research consortia and one Data and Technology Coordinating Center. On February 8, 2009, the ORDR, in collaboration with 10 NIH Institutes, released two RFAs for the recompetition of the RDCRN. In collaboration with NICHD, NINDS, NIAMS, NIDDK, NHLBI, National Cancer Institute (NCI), National Institute on Aging (NIA), National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute of Allergy and Infectious Diseases (NIAID), and the National Institute of Dental and Craniofacial Research (NIDCR), ORDR issued an RFA for the recompetition of funding for individual consortia. In collaboration with NINDS, ORDR released an RFA for the recompetition of funding for the data management center. On October 5, 2009, the NIH announced that ORDR, in collaboration with NINDS, NICHD, NHLBI, NIDDK, NIAID, NIDCR, and NIAMS, funded 19 rare diseases clinical research consortia and one Data Management Coordinating Center.

Information of the funded applications provided follow:

Name of Consortium Principal Investigator /
Project Director
Rare Diseases Clinical Research Consortia (RDCRC)
Clinical Research Consortium for Spinocerebellar Ataxias * Ashizawa, Tetsuo, M.D.
Urea Cycle Disorders Consortium Batshaw, Mark L., M.D.
Primary Immune Deficiency Treatment Consortium Cowan, Morton, M.D.
Porphyria Rare Disease Clinical Research Consortium (RDCRC) Desnick, Robert J., Ph.D., M.D.
Developing a North American Mitochondrial Disease Consortium (NAMDC) Hirano, Michio, M.D.
Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas El-Naggar, Adel K., MD, Ph.D.
Nervous System Channelopathies: Pathogenesis and Treatment * Griggs, Robert C., M.D.
Dystonia Coalition Jinnah, Hyder A., M.D.
Genetic Disorder of Mucocilary Clearance Knowles, Michael R., M.D.
Nephrotic Syndrome Rare Disease Clinical Research Network Kretzler, Matthias, M.D.
Chronic Graft VS Host Diseases Lee, Stephanie J., M.D., MPH
Vasculitis Clinical Research Consortium Merkel, Peter A., M.D., Ph.D.
Hereditary Causes of Nephrolithaisis and Kidney Failure Milliner, Dawn S., M.D.
Rare Disease CRC for New Therapies and New Diagnostics Percy, Alan K., M.D.
Autonomic Rare Diseases Clinical Research Consortium Robertson, David Herlie, M.D.
Inherited Neurophathies Consortium (RDCRC) Shy, Michael E., M.D.
Sterol and Isoprenoid Diseases Consortium Steiner, Robert, D., M.D.
Lysosomal Disease Network Whitley, Chester B., M.D.
Brain Vascular Malformation Consortium: Predictors of clinical course Young, William L., M.D.
Data Management and Coordinating Center (DMCC)
Data Management and Coordinating Center (DMCC) Krischer, Jeffrey P., Ph.D.
* NIH funding for this consortium has ended.