Last Update: 08/17/2006 Printer Friendly Printer Friendly   Email This Page Email This Page  

Rare Disease Collaborative Research Centers

In November 2002, the Rare Disease Act of 2002 (P.L. 107-280) directed the NIH Office of Rare Diseases to establish a Rare Disease Clinical Research Network —a collaborative and coordinated network of investigators and patient groups that investigates rare diseases in partnership with technology leaders to enhance communication and resource sharing via a multidisciplinary approach.  The Network collects clinical information to develop biomarkers and new approaches to diagnosis, prevention, and treatment; provides content for an Internet-based resource site about rare diseases; and trains new clinical investigators in rare disease research.  The Network also supports a comprehensive and integrated approach to data collection, storage, and management and integrates clinical data with other unique data, including genetic, imaging, pathologic, and laboratory data through the Data and Technology Coordinating Center.

The first competition for the RDCRCs in 2003 established eight funded centers; there are now 10.  Through the Mental Retardation and Developmental Disabilities (MRDD) Branch, the NICHD provides scientific management for the following two centers and their affiliate sites:

  • Children’s National Medical Center (Washington, D.C.), with affiliated sites at:  Baylor College of Medicine (Houston, Texas); Children’s Hospital of Philadelphia (Philadelphia, Pennsylvania); Yale University (New Haven, Connecticut); Georgetown University (Washington, D.C.); University of California at Los Angeles (Los Angeles, California); Vanderbilt University (Nashville, Tennessee); and Mount Sinai School of Medicine (New York City, New York)
  • Baylor College of Medicine (Houston, Texas), with affiliated sites at:  University of Alabama at Birmingham (Birmingham, Alabama); University of Florida (Gainesville, Florida); Children’s Hospital (Boston, Massachusetts); Greenwood Genetics Center (Greenwood, South Carolina); Children’s Hospital (San Diego, California); and University of California, Irvine, Medical Center (Irvine, California)