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NIH announces expansion of Rare Diseases Clinical Research Network
Date:10/6/2009

tion is a critical element of rare diseases research and the partnerships represented in this program have tremendous potential to make great strides in understanding these diseases," said Stephen C. Groft, Pharm.D., director of NIH's Office of Rare Diseases Research (ORDR). "The network emphasizes collaboration not just among investigators from multiple research sites but between investigators and patient advocates as well."

The direct involvement of patient advocacy groups in network operations, activities, and strategy is a major feature of the RDCRN. Each consortium in the network includes relevant patient advocacy groups in the consortium membership and activities. These patient advocacy group representatives serve as research partners within their own consortia. Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the RDCRN. The CPAG participants meet frequently throughout the year via teleconference and face-to-face meetings. They participate in network-level discussions and meetings. The CPAG chairperson is a voting member of the RDCRN Steering Committee.

Funds and scientific oversight for the RDCRN will be provided by ORDR and seven NIH Institutes, which will also contribute considerable administrative support to the network: the National Institute of Neurological Disorders and Stroke (NINDS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the National Institute of Dental and Craniofacial Research (NIDCR), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the National Heart, Lung and Blood Institute (NHLBI). Several consortia will also receive financial support from their associated patient advocacy groups.


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Contact: Kelli Marciel
Kelli.Marciel@nih.gov
301-496-4819
NIH/National Institutes of Health, Office of Disease Prevention
Source:Eurekalert

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