Research Updates in Kidney and Urologic Health

NIDDK Establishes Central Repositories

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is committed to sharing research data and biological specimens collected by its funded researchers. The value of these resources extends well beyond the scope and duration of the funded project.

To facilitate sharing of the samples and data collected in selected large clinical studies, the NIDDK established the Central NIDDK Repositories in July 2003. The Central Repositories will allow the broader research community to access the biosamples and data from many studies.

There are three Central Repositories:

1. Biosample Repository (administered by McKesson Bioservices Corp., Rockville, MD)—Receives biosamples collected in many different studies, stores the samples under optimal conditions, and distributes them to qualified investigators.
   
   
2. Genetics Repository (administered by Rutgers, The State University of New Jersey, New Brunswick, NJ)—Receives blood samples collected in many different studies and processes them to create immortalized cell lines and DNA samples. In addition, the Genetics Repository also cryopreserves blood cells, extracts DNA from blood samples, stores samples of DNA under optimal conditions, and distributes DNA samples to qualified investigators.
   
   
3. Data Repository (administered by Research Triangle Institute, Research Triangle Park, NC)—Receives, archives, maintains, and distributes databases or parts of 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 three Central Repositories, and maintains the Central Repositories website.

NIDDK will designate studies to submit samples or data to the Central Repositories. Among the current repository holdings are plasma, serum, and DNA samples collected by NIDDK's Dialysis Access Consortium. Ongoing trials that will contribute samples and data to the repositories include the Polycystic Kidney Disease Treatment Network (HALT PKD), Chronic Renal Insufficiency Cohort Study (CRIC), Hemodialysis Study (HEMO), Folic Acid for Vascular Outcome Reduction in Transplantation (FAVORIT), Complementary and Alternative Medicine for Urological Symptoms (CAMUS).

All qualified investigators will be allowed access to the stored materials at the end of a pre-determined proprietary period, which will be mutually agreed upon by the study's steering committee and NIDDK. In general, this proprietary period will be no longer than 2 years from accrual of the last sample or patient data.

Sharing reinforces open scientific inquiry, encourages diversity of analysis and opinion, promotes new research, makes possible the testing of new or alternative hypotheses and methods of analysis, supports studies on data collection methods and measurement, facilitates the education of new researchers, enables the exploration of topics not envisioned by the initial investigators, and permits the creation of new datasets when data from multiple sources are combined.

Additional information about the NIDDK Central Repositories can be found online at www.niddkrepository.org. Inquiries should be sent to Rebekah S. Rasooly, Ph.D., Division of Kidney, Urologic, and Hematologic Diseases, NIDDK, 301–594–6007, repositories@extra.niddk.nih.gov.

NIH Publication No. 04–4531
May 2004