RARE Daily

NCATS Seeks Applicants for Rare Disease Clinical Research Consortia Funding

April 4, 2024

Rare Daily Staff

The National Institutes of Health’s National Center for Advancing Translational Sciences is seeking new and renewal applicants for its Rare Diseases Clinical Research Consortia.

The consortia, which make up the Rare Diseases Clinical Research Network, works to advance and improve diagnosis, management, and treatment of rare diseases through collaborative and patient-centric research.

The program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing.

Advancing rare disease research by freely sharing high-value data is a critical goal of the program. All award recipients are required to work collaboratively within the RDCRN Data Management and Coordinating Center cloud environment and to ultimately share their data within the RDCRN Data Repository. Informed consent for every protocol should include language that allows broad sharing of the data while protecting the confidentiality of and minimizing the risk for re-identification of the participant.

Since its inception, the program has successfully supported 33 individual RDCRCs that have conducted research on a total of nearly 250 individual disorders. The research conducted within the RDCRN has contributed to the U.S. Food and Drug Administration’s approval for 11 treatments for rare diseases.

Applications for the funding opportunity are due by August 13, 2024.

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