Trove of NIDDK Data, Samples Growing in Popularity
Data and biosamples from the following trials are now available:
- The Diabetes Prevention
- The Diabetes Prevention Type 1
- The NIDDK Liver Transplantation Database
- The National Analgesic Nephropathy Study
- The Modification of Diet in Renal Disease
- The Interstitial Cystitis Database
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is seeing an upwelling of interest in its fledgling repositories of study data, particularly the resource giving investigators access to detailed information from landmark NIDDK trials, including the Diabetes Prevention Program (DPP).
The data are available through the NIDDK Central Repository at www.niddkrepository.org. By ensuring the information is easily—and freely—accessible, Rebekah Rasooly, Ph.D., who oversees the NIDDK project, said any researcher can generate hypotheses without spending months of time or millions of dollars.
“A certain amount of activation energy is needed to start new research. In the past, it has almost not been worth the effort,” she said, outlining the arduous process of contacting investigators and acquiring data. “With the Central Repository, it’s available to anyone, and it’s available in a very streamlined manner.”
‘Enormously Valuable’
Rasooly said she is especially excited by the prospect of additional analysis of the DPP findings. The overall finding—that lifestyle changes can prevent or delay type 2 diabetes in most high-risk patients—has already helped alter the way the disease is approached, and the repository enables researchers to more carefully examine certain populations and further hone prevention messages.
“The DPP is enormously valuable,” said Rasooly. “These are lynchpin data in what is a key public health study.”
In addition to raw data, the Central Repository also archives DNA information and biological samples such as blood and tissue from certain NIDDK-funded studies. Datasets are available free of charge to requestors, though requests that require the NIDDK to do more than 2 hours of analytical work are billed. Access to samples from the DNA and biosample repositories requires approval by a review panel.
Expanding Resources
Rasooly said the NIDDK is “constantly expanding” the Central Repository. She said she sees the resource as key in maximizing the value of large, multi-center clinical trials funded by the Institute by making as much data as possible available from those studies.
“It is only in the last few years that the NIDDK has launched a number of large, multi-site trials,” said Rasooly. “The repositories leverage the value of each study. That’s the most important thing.”
The NIDDK funds the repositories through three contracts: a biosample repository, a genetics repository, and a data set archive. The three repositories have been funded since June 2003, and Rasooly said the NIDDK’s focus will remain on raising investigator awareness of the rich samples and datasets available.
“The momentum has built up enormously,” she said, noting that interest is “passionate” for information about some of the NIDDK’s better-known trials. Now, she added, the objective is ensuring that the scientific community is aware of the breadth of the samples. “The biggest challenge is to get people to start using the archival samples, especially the archival datasets.”
In the future, the NIDDK plans to continue building efforts by adding studies to those that already provide samples and data to the repositories, and Rasooly said she hopes that the three centers will be able to provide a broader range of services to investigators.
NIH Publication No. 06–5743
July 2006
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