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Activity Number:
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30
- Quality in Numbers: NIH Experience in Data Repositories
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Type:
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Topic Contributed
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Date/Time:
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Monday, August 3, 2020 : 10:00 AM to 11:50 AM
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Sponsor:
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Caucus for Women in Statistics
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Abstract #312614
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Title:
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NIDDK Data and Sample Repositories
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Author(s):
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Elizabeth C Wright* and Tolulope M Abidogun and Sharon M Lawlor and Rebecca M Rodriguez
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Companies:
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NIDDK/NIH and National Institute of Diabetes Digestive and Kidney Diseases/NIH and National Institute of Diabetes Digestive and Kidney Diseases/NIH and National Institute of Diabetes Digestive and Kidney Diseases/NIH
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Keywords:
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Data repository;
Data sharing;
Clinical trial;
NIH
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Abstract:
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The National Institute of Digestive Diabetes and Kidney Diseases (NIDDK) Central Repository (CR) (https://repository.niddk.nih.gov/home/) is one of 65 data repositories funded by the National Institutes of Health (NIH) https://www.nlm.nih.gov/NIHbmic/nih_data_sharing_repositories.html. The NIDDK CR stores data and biosamples collected in selected large multicenter NIDDK-funded clinical studies. The purpose of the CR is to expand the usefulness of these studies by allowing a wider research community to access data and materials. Per NIDDK Data Sharing Policy, data and documentation should be sent to the CR within 6 months of a primary outcome publication or within 2 years of database lock. CR staff conduct dataset integrity checks for selected publications to ensure that results can be replicated using CR data. Data requestors must submit an application that includes approval from their institution’s Institutional Review Board and must sign a data use agreement. As of January 2020, data are available for 42 observational studies and 62 clinical trials and over 600 requests for data have been approved, approximately 15% of which mention innovative statistical methods.
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Authors who are presenting talks have a * after their name.
