NIH establishes Rare Diseases Clinical Resear...( dical Research by Dr. Zerhouni. Each r...)

dical Research" by Dr. Zerhouni. Each research center consists of a consortium of clinical investigators partnering with patient support groups and institutions within and outside of the United States that have agreed to work together studying a group of rare diseases. In addition to fostering collaborative research, the RDCRCs will train new investigators for the represented rare diseases and provide content for a public Web site on rare diseases research.

Integration of various kinds of data including genetic, microarray, clinical, laboratory, and imaging, is one of the goals of this informatics approach to clinical research. The RDCRCs and their sites will work with the DTCC in developing common data elements, data standards, and data structures. The DTCC will incorporate new approaches to data sharing and federated databases at distributed sites that are scaleable or have the potential for future expansion and adaptation. This approach will enable researchers to integrate data with other clinical networks, such as the National Electronic Clinical Trials and Research (NECTAR) network.

Each RDCRC will utilize the resources available at the General Clinical Research Centers -- 82 facilities distributed across the United States that provide clinical investigators with specialized research environments and specially trained research personnel. Supported by NCRR, the facilities include nursing staff, research subject advocates, and various core technologies, including sophisticated laboratories, nutrition staff, and imaging facilities.

The creation of the network responds to the Rare Disease Act of 2002, which directed NIH to support "regional centers of excellence for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for rare diseases." The term "rare (or orphan) disease," as defined in the Orphan Drug Act, is a condition affecting fewer than 200,000 in the United States or a disea
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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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