Data Sharing for Pediatric Clinical Trials Funded by the US National Institutes of Health.

• Type of Material: Article
• Authors: Claire Narang, Boston Children’s Hospital, Massachusetts; Michelle Ouvina, Boston Children’s Hospital, Massachusetts; Chris A Rees, Emory University; Florence T Bourgeois, Harvard Medical School
• Language: English
• Date: 2023-07-03
• Publisher: American Medical Association.
• Publication Version: Final Published Version
• Copyright Statement: 2023 Narang C et al. JAMA Network Open.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1001/jamanetworkopen.2023.25342
• Title of Journal or Parent Work: JAMA Netw Open
• Volume: 6
• Issue: 7
• Start Page: e2325342
• End Page: e2325342
• Grant/Funding Information: This work was supported by an Innovation in Regulatory Science Award from the Burroughs Wellcome Fund.
• Keywords: United States; Information Dissemination; Humans; National Institutes of Health (U.S.); Child
• Research Categories: Health Sciences, Public Health; Health Sciences, General

Abstract

The National Institutes of Health (NIH) has a longstanding commitment toward data sharing to maximize the value of clinical research. Sharing of individual participant data promotes transparency and trust in scientific findings, enables replication and validation of results, and facilitates data reuse in future studies. Most recently, effective January 25, 2023, the NIH began requiring data management and sharing plans in grant applications to increase sharing of scientific data generated from research supported by the NIH.1 Access to and reuse of data may be particularly valuable for pediatric research, because conducting clinical trials is often more challenging for pediatric populations.2 In this study, we assessed declared data sharing in publications for a recent set of pediatric clinical trials funded by the NIH.