Data Sharing Experience, Guidance, and Resources From the Rare Diseases Clinical Research Network (RDCRN).

ABSTRACT: The Rare Diseases Clinical Research Network (RDCRN) comprises research consortia and other partners focused on the study of rare diseases. Its goals include sharing de-identified data with the scientific community and other stakeholders to advance rare disease research. The RDCRN Data Use & Data Sharing Committee and RDCRN Data Management and Coordinating Center reviewed data sharing practices across established consortia and published literature to develop guidance documents. The Committee produced "RDCRN Suggestions for Establishing Data Sharing and Data Management Guidance for Individual Consortia", which lays out the common elements of successful data sharing, and "Principles of Data Sharing Checklist," which outlines the components of informed consent language, contractual language, a

SUBMITTER: Schwendeman E 

PROVIDER: S-EPMC12405054 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature