About the Central Repository

In 2003, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH established data and biospecimen repositories to increase the impact of current and previously funded NIDDK studies by making their study generated resources available to the broader scientific community. The Central Repository enables scientists not involved in the original study to test new hypotheses without the need to collect any new data or biospecimens, and provides the opportunity to pool data across several studies to increase the power of statistical analyses. In addition, most NIDDK-funded studies are collecting genetic biospecimens and carrying out high-throughput genotyping making it possible for other scientists to use Central Repository resources to match genotypes to phenotypes and to perform informative genetic analyses.

The Central Repository has two separate, yet integrated contract supported components:

• Biorepository - Precision for Medicine
  (8425 Precision Way, Suite M, Frederick, MD 21701)

Receives biospecimens collected in many different studies, stores and distributes them under optimal conditions, to qualified investigators. The Contractor for the Biospecimen Repository is Precision for Medicine of Frederick, MD.

• Data Repository - Booz Allen Hamilton, Inc.
  (4747 Bethesda Ave, Bethesda, MD 20814)

Receives, archives, maintains and distributes data from studies. In addition the Data Repository analyzes stored data in response to inquiries, assists ongoing studies in preparing data for eventual archiving, coordinates cross-referencing genotyping data housed at the National Center for Biotechnology Information's (NCBI) database of Genotypes and Phenotypes (dbGaP) for specified studies, and maintains the Central Repository website. The Contractor for the Data Repository is Booz Allen Hamilton, Bethesda, MD.

The NIDDK Central Repository has four major domains and functional areas:

• An archive of clinical data and documentation from NIDDK-sponsored studies
• A collection of biospecimens and an associated database that identifies specimens collected from ongoing and completed studies and links them to the associated phenotypic data
• A web portal that contains study-specific information within the Central Repository and accepts electronic requests for biospecimens and data
• A collection of genotyping data from GWAS and sequencing studies housed at dbGaP

For more information about the Central Repository, please read the Frequently Asked Questions.

For additional information about the Central Repository, please read publicly available primary manuscripts: PMC3243603 PPMC1481598 PMC4386252 PMC3625049 PMC3959283

Information on NIDDK Repository Privacy Statement

Information on NIDDK Multicenter Clinical Research.

Technical inquiries should be sent to: Rebecca M. Rodriguez, Ph.D., Office of Clinical Research Support, NIDDK Central Repository, NIDDK, NIH, Bethesda, MD 20892, 301-594-6007, rebecca.rodriguez2@nih.gov

Operational inquiries should be sent to: Booz Allen Hamilton, Inc, 4747 Bethesda Ave, Bethesda, MD, 20814, NIDDK-CRsupport@niddk.nih.gov

The NIDDK Central Repository would like to acknowledge the National Heart, Lung, and Blood Institute and its BioLINCC Program for allowing NIDDK to benefit from the BioLINCC website framework and some of the features for request submission and fulfillment.