Clinical trial data-sharing policies among journals, funding agencies, foundations, and other professional organizations: a scoping review
Abstract
Background and objectives To identify the similarities and differences in data-sharing policies for clinical trial data that are endorsed by biomedical journals, funding agencies, and other professional organizations. Additionally, to determine the beliefs, and opinions regarding data-sharing policies for clinical trials discussed in articles published in biomedical journals.Methods Two searches were conducted, a bibliographic search for published articles that present beliefs, opinions, similarities, and differences regarding policies governing the sharing of clinical trial data. The second search analyzed the gray literature (non-peer-reviewed publications) to identify important data-sharing policies in selected biomedical journals, foundations, funding agencies, and other professional organizations.Results A total of 471 articles were included after database search and screening, with 45 from the bibliographic search and 426 from the gray literature search. A total of 424 data-sharing policies were included. Fourteen of the 45 published articles from the bibliographic search (31.1%) discussed only advantages specific to data-sharing policies, 27 (27/45; 60%) discussed both advantages and disadvantages, and 4 (4/45; 8.9%) discussed only disadvantages specific. A total of 216 journals (of 270; 80%) specified a data-sharing policy provided by the journal itself. One hundred industry data-sharing policies were included, and 32 (32%) referenced a data-sharing policy on their website. One hundred and thirty-six (42%) organizations (of 327) specified a data-sharing policy.Conclusion We found many similarities listed as advantages to data-sharing and fewer disadvantages were discussed within the literature. Additionally, we found a wide variety of commonalities and differences-such as the lack of standardization between policies, and inadequately addressed details regarding the accessibility of research data-that exist in data-sharing policies endorsed by biomedical journals, funding agencies, and other professional organizations. Our study may not include information on all data sharing policies and our data is limited to the entities' descriptions of each policy.
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Concerns about data sharing involve a perceived risk of reidentification of individuals, especially in trials enrolling participants with rare diseases, and inappropriate use of the data by other researchers or groups with a particular agenda can be a barrier to sharing.
“Concerns about data sharing involve a perceived risk of reidentification of individuals, especially in trials enrolling participants with rare diseases. Also, inappropriate use of the data by other researchers or groups with a particular agenda can be a barrier to sharing.89”
From SPIRIT 2025 explanation and elaboration: updated guideline for protocols of randomised trials (2025) · cites this paper as [89]
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Chen, E., Rowe, M., Khan, A. Z., Gardner, T., Bratten, C., Young, A., Paul, E., Nees, D., Ford, A. I., & Vassar, M. B. (2025) · The Journal of Headache and Pain · doi:10.1186/s10194-025-02158-1 · Cited by 2 · see citing works
Self-citationLi, W., Liu, X., Zhang, Q., Shi, L., Zhang, J.-X., Zhang, X., Luan, J., Li, Y., Xu, T., Zhang, R., et al. (2026) · Accountability in Research · doi:10.1080/08989621.2025.2481943 · Cited by 1 · see citing works
“…data-code-sharing practices – is imperative (Milkman and Berger 2014Nagaraj, Shears, and de Vaan 2020; Roche 2017), which can be achieved by optimizing and unifying the DAC sharing policies within the above publishing ecosystem, such as standardizing DAC sharing requirements (Johnson et al. 2023).”
Goldstein, C. E., Armond, A. C. V., Cobey, K. D., Voldal, E. C., Chen, Y., Tingley, K., Shaw, J. F., Heagerty, P. J., Hemming, K., Kenny, A., et al. (2026) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2026.112353 · Cited by 1 · see citing works
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Journal data-sharing policies and its impact in publications: A cross-sectional study protocol
Zhao, P., Zhang, X., Dai, L., Ma, B., Duan, Y., Xu, Y., Hongmei, W., Wu, S., & Xiong, L. (2025) · PLoS ONE · doi:10.1371/journal.pone.0331697
Data sharing intentions of neuroscience researchers: A consequentialist theory perspective
Wu, Z., Huang, L., Wang, M., & He, X. (2026) · Library & Information Science Research · doi:10.1016/j.lisr.2026.101398
Harris, T., Sanchez, B., Hagood, A., Elfar, A., Duncan, J., Gardner, T., Paul, E., Ladd, C., Ford, A. I., & Vassar, M. (2026) · Canadian Journal of Anesthesia/Journal canadien d anesthésie · doi:10.1007/s12630-026-03093-8
Self-citation
- Authors
- Johnson, A. L., Anderson, J. M., Bouvette, M., Pinero, I., Rauh, S., Johnson, B., Kee, M., Heigle, B., Tricco, A. C., Page, M. J., McCall Wright, P., & Vassar, M.
- Affiliations
- The University of Texas Medical Branch at Galveston (US)
- Oklahoma State University Center for Health Sciences (US)
- University of Oklahoma (US)
- St. Michael's Hospital (CA)
- Monash University (AU)
- ORCID
- Venue
- Journal of Clinical Epidemiology
- Publisher
- Elsevier BV
- Published
- 2023-02
- Volume
- 154
- Pages
- 42-55
- ISSN
- 0895-4356 (ISSN-L)
- OpenAlex
- W4308784182
- Cited by
- 11
- References
- 99
- Citations by year
- 2026: 4 · 2025: 5 · 2024: 2
- FWCI
- 0.22
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Journal of Clinical Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Institute on Drug Abuse (R15DA049201)
- Australian Research Council (DE200101618)
- Topics
- Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
- Social Sciences › Decision Sciences › Information Systems and Management › Academic Publishing and Open Access
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmaceutical industry and healthcare
- Keywords
- clinical trial data sharing, data sharing policy, biomedical journals, research funding agencies, professional associations, research data accessibility, policy standardization, research data management
- MeSH terms
- Humans, Periodicals as Topic, Publications, Societies, Information Dissemination, Policy
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