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Rare Diseases Clinical Research Network (RDCRN)

Current Funding Opportunity

Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network


Request for Application (RFA) TR-13-002,
Application Receipt Date:  November 7, 2013

Rashmi Gopal-Srivastava, Ph.D.

On August 14th, 2013 the ORDR/NCATS, in collaboration with NINDS, NICHD, NIDDK, NEI, NIAMS, NCI, NIAID, NIDCR, NHLBI and ODS reissued the RFA for individual consortia (RDCRC) for RDCRN through an open competition.  
The purpose of this cooperative agreement research program is to facilitate clinical research in rare diseases through support for 1) collaborative clinical research in rare diseases, including longitudinal studies of individuals with rare diseases, clinical studies, and/or clinical trials;   2) training of clinical investigators in rare diseases research; 3) pilot/demonstration clinical research projects; and 4) access to information related to rare diseases for basic and clinical researchers, academic and practicing physicians, healthcare professionals, patients, and the public. 

This RFA allows RDCRC applications for all rare diseases research relevant to the mission of the participating NIH ICs.  Prospective applicants are urged to consult with the Scientific/ Research Contacts of the NIH early in the preparation of the application.  

The key deadline for the RDCRC RFA is indicated in the table below.  A pre-application meeting ( was held on September 25, 2013. The videocast and slides for this meeting are provided below:
RDCRC RFA Pre-Application Meeting slides

Release Date August 14, 2013 Webcast link:

Archive will be posted after September 25, 2013

Letters of Intent Receipt Date October 7, 2013
Application Receipt Date November 7, 2013
Peer Review Date(s) Feb. / Mar. 2014
Council Review Date May 2014
Earliest Anticipated Start Date July 2014


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) 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.

Currently funded:

Name of Consortium Principal Investigator/
Project Director
Urea Cycle Disorders Consortium Batshaw, Mark L., M.D.
Primary Immune Deficiency Treatment Consortium Cowan, Morton, M.D.
The Porphyrias Consortium Desnick, Robert J., Ph.D., M.D.
North American Mitochondrial Disease Consortium (NAMDC) Hirano, Michio, M.D.
Salivary Gland Carcinomas Consortium El-Naggar, Adel K., MD, Ph.D.
Dystonia Coalition Jinnah, Hyder A., M.D.
Genetic Disorders of Mucocilary Clearance Consortium Knowles, Michael R., M.D.
Nephrotic Syndrome Study Network (NEPTUNE)  Kretzler, Matthias, M.D.
Chronic Graft-Versus-Host Disease Consortium Lee, Stephanie J., M.D., MPH
Vasculitis Clinical Research Consortium Merkel, Peter A., M.D., Ph.D.
Rare Kidney Stone Consortium Milliner, Dawn S., M.D.
Angelman, Rett & Prader-Willi Syndromes Consortium Percy, Alan K., M.D.
Autonomic Disorders Consortium Robertson, David Herlie, M.D.
Inherited Neuropathies Consortium Shy, Michael E., M.D.
Sterol and Isoprenoid Research Consortium (STAIR)  Steiner, Robert, D., M.D.
Lysosomal Disease Network Whitley, Chester B., M.D.
Brain Vascular Malformation Consortium (BVMC)

Lawton, Michael, M.D.

Data Management and Coordinating Center (DMCC):

Name of Consortium Principal Investigator/
Project Director
Data Management and Coordinating Center (DMCC) Krischer, Jeffrey P., Ph.D.

NIH Funding has ended for the following RDCRCs:

Name of Consortium Principal Investigator/
Project Director
Clinical Research Consortium for Spinocerebellar Ataxias Ashizawa, Tetsuo, M.D.
Consortium for Clinical Investigation of Neurological Channelopathies (CINCH) Griggs, Robert C., M.D.

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