Pathways for Review and Release of Available NIDDK Repository Samples

May 2019 Council

Lead Division/Office

DEM / DDN / KUH

Point(s) of Contact

Lisa Spain, Ph.D.

Executive Summary

NIDDK seeks maximal scientific benefit from the data and samples collected from multi-center and large single-center clinical studies in which it has invested substantial resources. For this purpose, NIDDK has established the NIDDK Central Repository to house study data and biologic and genetic samples, and to make them available to interested scientists. The Repository houses 15 million non-renewable biosamples, such as DNA, RNA, cells, serum, plasma, urine, tissue, and more, with their associated data, providing a valuable resource that allows researchers to rapidly validate clinical hypotheses or new algorithms for clinical decision-making. The collection is also advancing the development of prognostic variables, biomarkers, and therapeutics for diseases related to the mission of the NIDDK. The Repository facilitates sharing of NIDDK-supported resources, consistent with NIH Sharing Policies, and encourages work by junior investigators, investigators with novel approaches, and new collaborations. Sharing samples from NIDDK Repositories helps to maximize the contributions of research participants and decreases duplicative sampling efforts. Since 2013, over 29,000 samples have been shipped to investigators from the NIDDK repository, and the goal is to increase the number of samples that are distributed for research. The proposed concept would provide mechanisms to oversee and approve requests for access to the valuable resources stored in the NIDDK Central Repository.