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Rare Diseases Clinical Research Network (RDCRN)

The Rare Diseases Clinical Research Network (RDCRN) is designed to advance medical research on rare diseases by facilitating collaboration, study enrollment and data sharing. Through the network, scientists from multiple disciplines at hundreds of clinical sites around the world work together with patient advocacy groups to study more than 200 rare diseases.

The purpose of the RDCRN is to facilitate clinical research in rare diseases through support for:

  • Collaborative activities, including multisite longitudinal studies of individuals with rare diseases; and/or Phase I, II and II/III trials.
  • Training of clinical investigators in rare diseases research.
  • Pilot and demonstration projects.
  • Uniform data collection protocols.
  • Cost-sharing infrastructure.
  • Access to information about rare diseases for basic and clinical researchers, academic and practicing physicians, patients, and the public.

The RDCRN was established in 2003 by the NIH Office of Rare Diseases and now is overseen by NCATS. Since its launch, nearly 29,000 patients have been enrolled in network clinical studies. As of October 2014, the network is composed of about 2,600 researchers including NIH scientific program staff, and academic investigators and members of 98 patient advocacy groups; 91 studies are underway. Learn more about the RDCRN program, including current clinical research consortia and its data management and coordinating center.

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