ArticleEuropean journal of human genetics : EJHG2016
Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
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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.
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Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- 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
- Launching a multi-level data strategy for rare eye diseases: a methodological case study from national to European scale.Orphanet journal of rare diseases · 2026Article
- Privacy in perspective: research participants' priorities and concerns related to sharing data generated in human neuroscience studies.Neuroethics · 2025Article
- Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing.Acta neurochirurgica · 2024Review
- Article
- Factors Influencing the Sharing of Personal Health Data Based on the Integrated Theory of Privacy Calculus and Theory of Planned Behaviors Framework: Results of a Cross-Sectional Study of Chinese Patients in the Yangtze River Delta.Journal of medical Internet research · 2023Observational
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Challenges in mapping European rare disease databases, relevant for ML-based screening technologies in terms of organizational, FAIR and legal principles: scoping review.Frontiers in public health · 2023Article
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
- Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals.International journal of environmental research and public health · 2022Article
- The Importance of and Challenges with Adopting Life-Cycle Regulation and Reimbursement in Canada.Healthcare policy = Politiques de sante · 2022Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- Sharing Government Health Data With the Private Sector: Community Attitudes Survey.Journal of medical Internet research · 2021Article
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Empirically-derived synthetic populations to mitigate small sample sizes.Journal of biomedical informatics · 2020Article
- Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.European journal of human genetics : EJHG · 2020Article
- Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland.HRB open research · 2020Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a European leukodystrophies database. A survey questionnaire was delivered with help from referral centers and the European Leukodystrophies Association, and the questionnaires returned were both quantitatively and qualitatively analyzed. This study found that patients/families were strongly in favor of participating. Patients/families hold great hope and trust in the development of this type of research. They have a strong need for information and transparency on database governance, the conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry, and they also need access to results. Our findings bring ethics-driven arguments for a process combining initial broad consent with ongoing information. On both, we propose key item-deliverables to database participants.
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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.