Data Management and Coordinating Center (DMCC) for Rare Diseases Clinical Research Network (RDCRN) (U01)

Submission Date: December 19, 2013

Award Ceiling: $3,000,000

The Office of Rare Diseases Research (ORDR)-NCATS and NINDS invite new and renewal applications (U01) for the RDCRN Data Management and Coordinating Center (DMCC). In a companion FOA, the ORDR-NCATS, along with 10 Institutes, Centers, and Offices, invite new and renewal applications (U54) for the Rare Diseases Clinical Research Consortium (RDCRCs) component of the Rare Diseases Research Network (RDCRN). Each RDCRC will perform collaborative multi-site clinical research in rare diseases, train new investigators in rare diseases research, and provide content for an internet resource site on rare diseases. Each RDCRC will consist of a consortium of clinical investigators, institutions, and relevant organizations, including patient advocacy group organizations, and will focus on at least three related rare diseases, disorders or syndromes. Previous experience with the RDCRN has demonstrated that RDCRCs that both engage and integrate patient advocacy groups into their research program have achieved greater success in enrollment in studies. The focus of each RDCRC can be on particular defects, e.g., lysosomal storage diseases, amino acid metabolism defects; particular organ systems, e.g., primary immune deficiencies, neurodevelopmental delay and intellectual disability syndromes; or other groupings. Since rare diseases are diverse, the nature of clinical research that is feasible varies. The individual RDCRCs will be responsible for the design and implementation of their clinical studies.

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