ArticleThe New England journal of medicine2018
Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.
Article in The New England journal of medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 113 papers, 6 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
113 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Pooled it
- Effectiveness of dual-task exercise in improving balance and preventing falls among older adults: systematic review with meta-analysis and meta-regression.European geriatric medicine · 2025Pooled it
- Impact of steroid-sparing immunosuppressive agents on tumor outcome in the context of cancer immunotherapy with highlight on melanoma: a systematic literature review and meta-analysis.Frontiers in immunology · 2024Pooled it
- PRISMA 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews.BMJ (Clinical research ed.) · 2021Guideline
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- Landscape of Cardiovascular Device Registries in the United States.Journal of the American Heart Association · 2019Pooled it
- Weighing Open Science Against Research Participation Burden in Informed Consent: A Randomized Pilot Study.Journal of empirical research on human research ethics : JERHRE · 2025Trial
- Return of participant-level clinical trial results to participants: pilot of a simplified centralised approach.BMJ open · 2024Trial
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study.Journal of Parkinson's disease · 2026Article
- Dual-Task Exercises for Dynamic Balance, Motor Function, Functional Mobility, and Dual-Tasking in Individuals With Parkinson's Disease: A Meta-Analysis With Meta-Regression.Annals of rehabilitation medicine · 2026Article
- Ethical and Regulatory Awareness of Clinical Trials: A Nationwide Cross-Sectional Study from Poland.Therapeutic innovation & regulatory science · 2026Article
- The data transparency crisis in research: Lessons from systematic reviews and meta-analyses.PLoS medicine · 2026Article
- Renal Clinical Study Participants Support Data Sharing and Use of Artificial Intelligence.Kidney international reports · 2026Article
- Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda.BMC medical ethics · 2025Article
- Predicting Remission in Schizophrenia Using Machine Learning-Assessing the Impact of Sample Size and Predictor Overinclusion.Acta psychiatrica Scandinavica · 2025Article
- Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.Journal of personalized medicine · 2025Article
- The Impact of Research Results Feedback on the Lived Experiences of Elderly Participants in the DIMAMO Health Demographic Site: A Case of AWI-Gen Participants.International journal of environmental research and public health · 2025Article
- The development and validation of a privacy-preserving model based on federated learning for diagnosing severe pediatric pneumonia.Translational pediatrics · 2025Article
- Article
53 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
Background Sharing of participant-level clinical trial data has potential benefits, but concerns about potential harms to research participants have led some pharmaceutical sponsors and investigators to urge caution. Little is known about clinical trial participants' perceptions of the risks of data sharing. Methods We conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States. Surveys were distributed by mail (350 completed surveys) and in clinic waiting rooms (421 completed surveys) (overall response rate, 79%). Results Less than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93% were very or somewhat likely to allow their own data to be shared with university scientists, and 82% were very or somewhat likely to share with scientists in for-profit companies. Willingness to share data did not vary appreciably with the purpose for which the data would be used, with the exception that fewer participants were willing to share their data for use in litigation. The respondents' greatest concerns were that data sharing might make others less willing to enroll in clinical trials (37% very or somewhat concerned), that data would be used for marketing purposes (34%), or that data could be stolen (30%). Less concern was expressed about discrimination (22%) and exploitation of data for profit (20%). Conclusions In our study, few clinical trial participants had strong concerns about the risks of data sharing. Provided that adequate security safeguards were in place, most participants were willing to share their data for a wide range of uses. (Funded by the Greenwall Foundation.).
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.