NIH Releases a Request for Information-title-h1

NIH Releases a Request for Information

NIH Releases a Request for Information on Proposed Provisions for a Draft Data Management and Sharing Policy for NIH-Funded or Supported Research

The Gabriella Miller Kids First Data Resource Center (Kids First DRC), a component of the National Institutes of Health (NIH) Common Fund’s Gabriella Miller Kids First Pediatric Research Program, houses the largest database of pediatric genomic data in the world – combining whole genome sequences (WGS), RNA-seq, clinical, imaging, and histology data.  The Kids First DRC’s Data Resource Portal has amassed over 30,000 files (or 809.1 TB) of genetic data from over 9,000 tissue samples, gathered from 5,902 patients representing 1,694 family research participants.

This monumental cache of data comes as a direct result of collaboration between researchers, clinicians, foundations, and patients/families around the globe.  The NIH’s Gabriella Miller Kids First Pediatric Research Program, as well as leadership across the NIH has supported this collaborative effort.

On Wednesday, October 10, the NIH issued a Request for Information (RFI) to solicit public input on the proposed key provisions that could serve as a foundation for a future NIH policy for data management and sharing.

As stated in the recent RFI, “The NIH has a longstanding commitment to making the results and accomplishments of the research it funds and conducts available to the public.  Sharing scientific data and results enables researchers to more vigorously test the validity of research findings, strengthen analyses by combining data sets, access hard-to-generate data, and explore new frontiers.”

To learn more about the key provisions proposed:   
To provide comments visit:

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