Rare Diseases Clinical Research Network’s Data Management and Coordinating Center (DMCC)

The Rare Diseases Clinical Research Network’s Data Management and Coordinating Center (DMCC) at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati is funded by the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences to facilitate network operations, research, participant engagement and data sharing. Specifically, the DMCC advances the methods and the practice of rare disease research across the network and to the broader rare disease community; develops and maintains a leading-edge, shared commons encompassing data and best practices generated by RDCRN sites, consortia and community stakeholders; establishes the RDCRN as a globally connected resource for improving rare disease research across the entire rare disease ecosystem; and promotes collaboration and research study readiness, engages patients and families, and creates an “Esprit de Corps” for the RDCRN, through the adoption of learning system principles. The DMCC is comprised of four cores, each with distinct attributes and services that it provides to network participants: data management, clinical research, engagement and dissemination, and administration.

The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). The DMCC is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.