About the Central Repository

In 2003, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH established data and specimen repositories to increase the impact of current and previously funded NIDDK 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. In addition, most NIDDK-funded studies are collecting genetic biospecimens and carrying out high-throughput genotyping making it possible for other scientists to use Repository resources to match genotypes to phenotypes and to perform informative genetic analyses. In 2011, the Central Repository staff authored a manuscript "The NIDDK Repository at 8 Years, Ambition, Revision, Use and Impact" which was published in the journal Database. The peer reviewed article documents the use and impact the Repository continues to have on the scientific community.

There are two Repositories:

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

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

• Data Repository - Information Management Services, Inc (IMS)
  (3901 Calverton Blvd, Calverton, MD 20705)

Receives, archives, maintains and distributes databases 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 between the two Repositories, and maintains the Central Repository website. The Contractor for the Data Repository is Information Management Services, Inc, Calverton, MD.

The NIDDK Central Repository has four major components:

• 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 funded by NIDDK and links them to the associated phenotypic data
• A web portal that contains study-specific information within the Repository and accepts electronic requests for biospecimens and data
• A collection of genotyping data from GWAS and sequencing studies housed at the National Center for Biotechnology Information's (NCBI) database of Genotypes and Phenotypes (dbGaP)

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

For additional information about the Central Repository, please read the primary manuscript which is publicly available The NIDDK Repository at 8 Years, Ambition, Revision, Use and Impact.

Information on NIDDK Repository Privacy Statement

Information on NIDDK Multicenter Clinical Research.

Technical inquiries should be sent to: Beena Akolkar, Ph.D., Division of Kidney, Urologic and Hematologic Disease, NIDDK, NIH, Bethesda, MD 20892, 301-594-6007, akolkarb@mail.nih.gov

Operational inquiries should be sent to: Information Management Services, Inc, 3901 Calverton Blvd, Calverton, MD, 20705, 301-680-9770, niddk-cr@imsweb.com

Special Thanks

The NIDDK Central Repository development team would like to acknowledge the National Heart, Lung, and Blood Institute and its BioLINCC Program for the programming code used in the implementation of this website. The NIDDK Central Repository code was based on the BioLINCC framework, which shares many of the same advanced features and a well-defined yet flexible workflow for request submission and fulfillment.