|
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.
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