Digestive Diseases News
Fall 2006
Research News
Trove of NIDDK Data, Samples Growing in Popularity
Repository Makes Free Study Data Available to Researchers
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 the Diabetes Prevention Program (DPP) and other landmark NIDDK trials.
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.”
Data and biosamples from the following trials are now available:
The NIDDK Liver Transplantation Database The Interstitial Cystitis Database The Diabetes Prevention Program The Diabetes Prevention Type 1 Trial The National Analgesic Nephropathy Study The Modification of Diet in Renal Disease Study
Go to www.niddkrepository.org for more information.
‘Enormously Valuable’
Rasooly said she is especially excited by the prospect of additional analysis of the DPP findings.
“The DPP is enormously valuable,” said Rasooly. “Its findings represent lynchpin data in what is a key public health study.”
The overall finding—that lifestyle changes can prevent or delay type 2 diabetes in high-risk individuals—has already helped alter the way doctors and patients approach the disease. The repository enables researchers to more carefully examine certain populations and further hone prevention messages.
In addition to raw data, the Central Repository archives DNA information and biological samples such as blood and tissue from certain NIDDK-funded studies. Data sets are available free of charge to requesters, 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 from a review panel.
‘Expanding and Promoting’
Rasooly said the NIDDK is “constantly expanding” the Central Repository, which is a key
resource for maximizing the value of large, multisite, NIDDK-funded clinical trials by making as much data as possible available from those studies.
“The NIDDK has launched a number of large, multisite trials,” said Rasooly. “The repositories leverage the value of these studies.”
The NIDDK funds 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 data sets available.
“The momentum has built up enormously,” she said, noting that scientists have a “passionate” interest in information about some of the NIDDK’s better-known trials. Now 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 data sets.”
In the future, the NIDDK plans to continue building efforts by adding studies to those that
already provide samples and data to the repositories. Rasooly said she hopes the three repositories
will be able to provide a broader range of services to investigators.
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NIH Publication No. 07–4552
November 2006
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