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NIH establishes Rare Diseases Clinical Research Network

To address the challenges inherent in diagnosing and treating rare diseases, the National Institutes of Health (NIH) announced today the establishment of the Rare Diseases Clinical Research Network. With $51 million in grant funding over five years from several NIH components,* the network will consist of seven Rare Diseases Clinical Research Centers (RDCRCs) and a Data and Technology Coordinating Center (DTCC).

"Funding research on rare diseases is a vital aspect of the NIH mission," said NIH Director, Elias A. Zerhouni, M.D. "By encouraging cooperative partnerships among the investigators at these centers, we hope to accelerate the development of diagnostics and treatments that will benefit these important patients."

The RDCRCs and the DTCC will be located at the following institutions:

  • Baylor College of Medicine, Houston, TX -- Rare Disease Clinical Research Center for New Therapies and New Diagnostics -- Dr. Arthur L. Beaudet

  • Boston University School of Medicine, Boston, MA -- Vasculitis Clinical Research Network -- Dr. Peter A. Merkel

  • Children's Hospital Medical Center, Cincinnati, OH -- Rare Lung Diseases Clinical Research Network -- Dr. Bruce C. Trapnell

  • Children's National Medical Center, Washington, DC -- Rare Diseases Clinical Research Center for Urea Cycle Disorders -- Dr. Mark L. Batshaw

  • The Cleveland Clinic Foundation, Cleveland, OH -- Bone Marrow Failure Clinical Research Center -- Dr. Jaroslaw P. Maciejewski

  • University of Rochester, Rochester, NY -- Nervous System Channelopathies Pathogenesis and Treatment -- Dr. Robert C. Griggs

  • Weill Medical College of Cornell University, New York, NY -- The Natural History of Rare Genetic Steroid Disorders -- Dr. Maria I. New

  • H. Lee Moffitt Cancer Center and Research Institute, University of South Florida, Tampa, FL -- The Data and Technology Coordinating Center -- Dr. Jeffrey P. Krisch
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Contact: Joyce McDonald
info@ncrr.nih.gov
301-435-0888
NIH/National Center for Research Resources
3-Nov-2003


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