Task Area A-Maintaining and Enhancing the NIDDK Central Repository Program

NIH RePORTER · NIH · N01 · $1,563,149 · view on reporter.nih.gov ↗

Abstract

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH), U.S. Department of Health and Human Services (HHS), conducts and funds various clinical studies that generate or have generated a collection of biological specimens (biospecimens) and related phenotypic and clinical data/resources pertaining to these research activities. Storing and allowing subsequent use of biological materials and associated data collected in clinical studies is one way for the NIDDK to meet its responsibility to maximize the value of these studies. In 2003, the NIDDK established the NIDDK Central Repository, comprised of the data and specimen repositories to increase the impact of NIDDK-funded large clinical studies by making their data and biospecimens available to the broader scientific community. These repositories enable scientists not involved in the original study to test new hypotheses without any new data or biospecimen collection, and they provide the opportunity to pool data across several studies to increase the power of statistical analyses. There are two repositories under the umbrella of the NIDDK Central Repository: the NIDDK Biorepository receives biosamples collected in many different studies, stores the samples under optimal conditions, and distributes them to qualified investigators. The NIDDK Data Repository receives, archives, maintains, and distributes databases from studies. In addition, the NIDDK Data Repository analyzes stored data in response to inquiries, assists ongoing NIDDK-funded studies in preparing data for eventual archiving, coordinates cross-referencing between the clinical data and biosamples, and maintains the NIDDK Central Repository website (https://repository.niddk.nih.gov/home). The NIDDK Central Repository’s collection of the biosamples and associated clinical, diagnostic, genotypic, pedigree structure and other data is a resource that advances the development of diagnostic and treatment tools for many diseases. The project described in this Statement of Work, which will be referred to herein as the “NIDDK Data Repository,” stores the clinical research data from these studies, including data associated with the stored biosamples, and acts as the central coordinating entity for the NIDDK Central Repository. The NIDDK Data Repository facilitates efficient submission, distribution, and process monitoring and reporting related to study data and samples. As an archive and distributor of highly usable legacy datasets the NIDDK Data Repository also allows re-analysis of these data and, where relevant, of specific biosamples, thus encouraging work by investigators and others not included in the original funded studies. For more information on the NIDDK Central Repository, refer to the website at https://repository.niddk.nih.gov/home.

Key facts

NIH application ID
11041892
Project number
75N94021D00001-P00009-759402100001-1
Recipient
BOOZ ALLEN HAMILTON
Principal Investigator
MICHAEL KELLER
Activity code
N01
Funding institute
NIH
Fiscal year
2024
Award amount
$1,563,149
Award type
Project period
2023-12-01 → 2024-11-30