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Clinical trial data sharing: a cross-sectional study of outcomes associated with two U.S. National Institutes of Health models

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Rowhani-Farid, Anisa, Grewal, Mikas, Solar, Steven, Eghrari, Allen O., Zhang, Audrey D., Gross, Cary P., Krumholz, Harlan M., Ross, Joseph S.·2023·Scientific Data
DOI 10.1038/s41597-023-02436-0PMC PMC10409750
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Abstract

The impact and effectiveness of clinical trial data sharing initiatives may differ depending on the data sharing model used. We characterized outcomes associated with models previously used by the U.S. National Institutes of Health (NIH): National Heart, Lung, and Blood Institute’s (NHLBI) centralized model and National Cancer Institute’s (NCI) decentralized model. We identified trials completed in 2010–2013 that met NIH data sharing criteria and matched studies based on cost and/or size, determining whether trial data were shared, and for those that were, the frequency of secondary internal publications (authored by at least one author from the original research team) and shared data publications (authored by a team external to the original research team). We matched 77 NHLBI-funded trials to 77 NCI-funded trials; among these, 20 NHLBI-sponsored trials (26%) and 4 NCI-sponsored trials (5%) shared data (OR 6.4, 95% CI: 2.1, 19.8). From the 4 NCI-sponsored trials sharing data, we identified 65 secondary internal and 2 shared data publications. From the 20 NHLBI-sponsored trials sharing data, we identified 188 secondary internal and 53 shared data publications. The NHLBI’s centralized data sharing model was associated with more trials sharing data and more shared data publications when compared with the NCI’s decentralized model.

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Research works printed but not linked: 2

  1. [19]Committee on Strategies for Responsible Sharing of Clinical Trial Data, Board on Health Sciences Policy & Institute of Medicine. Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk. in (National Academies Press, 2015). 25590113
  2. [20]Rowhani-Farid A 2023 Clinical trial data sharing: A cross-sectional study of outcomes associated with two NIH models. Open Science Framework 10.17605/OSF.IO/T8B6G PMC10409750 37553403 · DOI

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Authors
Rowhani-Farid, A., Grewal, M., Solar, S., Eghrari, A. O., Zhang, A. D., Gross, C. P., Krumholz, H. M., & Ross, J. S.
Affiliations
  • University of Maryland, Baltimore (US)
  • Yale University (US)
  • National Institutes of Health (US)
  • Johns Hopkins University (US)
  • Duke University (US)
  • Yale New Haven Hospital (US)
Corresponding author
Rowhani-Farid, Anisa
ORCID
Venue
Scientific Data
Publisher
Springer Science and Business Media LLC
Published
2023-08-08
Volume
10
Issue
1
Pages
529-529
ISSN
2052-4463 (ISSN-L)
DOI
10.1038/s41597-023-02436-0
PMC
PMC10409750
OpenAlex
W4385664493
Cited by
10
References
16
Citations by year
2026: 2 · 2025: 4 · 2024: 2 · 2023: 2
Type
data paper
Language
en
Open access
Licence
Locations
  • Scientific Data (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
Laura and John Arnold Foundation (No grant number)
Topics
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
  • Social Sciences › Decision Sciences › Information Systems and Management › Academic Publishing and Open Access
  • Social Sciences › Sociology and Political Science › Data Analysis and Archiving
Keywords
clinical trial data sharing, data sharing policy, National Institutes of Health, National Heart, Lung, and Blood Institute, NCI, research data reuse, research funding agencies
MeSH terms
Clinical Trials as Topic, Cross-Sectional Studies, National Institutes of Health (U.S.), United States, Information Dissemination, National Cancer Institute (U.S.)

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