What is the Rare Diseases Clinical Research Network?

The Rare Diseases Clinical Research Network (RDCRN) an initiative of the Office of Rare Diseases Research, NCATS is funded by ORDR, NCATS and collaborating institute centers.

The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

267

clinical centers

43,845

patients have participated in research

90

available research studies

The Rare Diseases Clinical Research Network (RDCRN) was established by the Office of Rare Diseases Research (ORDR), which is now a part of the National Center for Advancing Translational Sciences (NCATS). The RDCRN began in 2003. In total, over 200 diseases are studied by the 21 research groups (consortia) of the RDCRN.

Press Release

On October 8, 2014, the NIH announced that physician scientists led 22 consortia consisting of multidisciplinary teams will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate new treatments for patients with rare diseases. Funding and scientific oversight for the RDCRN are provided by NCATS and 10 NIH components: the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Cancer Institute; the National Heart, Lung and Blood Institute; the National Institute of Allergy and Infectious Diseases; the National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Institute of Dental and Craniofacial Research; the National Institute of Diabetes and Digestive and Kidney Diseases; the National Institute of Mental Health; the National Institute of Neurological Disorders and Stroke and the Office of the Director. In addition, patient advocacy groups provide funds for many of the projects.

October 8, 2014: NIH funds research consortia to study more than 200 rare diseases

Previous Press Releases

October 5, 2009: NIH Announces Expansion of Rare Diseases Clinical Research Network
May 5, 2006: NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases
November 3, 2003: NIH Establishes Rare Diseases Clinical Research Network