ArticleClinical trials (London, England)2022
Current recommendations/practices for anonymising data from clinical trials in order to make it available for sharing: A scoping review.
Article in Clinical trials (London, England), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
What it found
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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
11 citing papers in PubMed.
- Adherence, Acceptability, and Sexual Health Outcomes of the Odeya App-Based Intervention for Sexual Distress in Women With Endometriosis: Randomized Controlled Mixed Methods Trial.Journal of medical Internet research · 2026Trial
- The processual construction of emotional experience and cultural identity: a qualitative interview study of intangible cultural heritage education in Chinese universities.Frontiers in psychology · 2026Article
- Leveraging Synthetic Data to Facilitate Research: A Collaborative Model for Analyzing Sensitive National Cancer Registry Data in England.Therapeutic innovation & regulatory science · 2025Article
- From Bedside to Desktop: A Data Protocol for Normative Intracranial EEG and Abnormality Mapping.Bio-protocol · 2025Article
- A quantitative analysis of the use of anonymization in biomedical research.NPJ digital medicine · 2025Article
- A survey on UK researchers' views regarding their experiences with the de-identification, anonymisation, release methods and re-identification risk estimation for clinical trial datasets.Clinical trials (London, England) · 2025Article
- A Scalable Pseudonymization Tool for Rapid Deployment in Large Biomedical Research Networks: Development and Evaluation Study.JMIR medical informatics · 2024Article
- Data from a national survey of United States primary care physicians on genetic risk scores for common disease prevention.Data in brief · 2024Article
- The epidemiology of errors in data capture, management, and analysis: A scoping review of retracted articles and retraction notices in clinical and translational research.Journal of clinical and translational science · 2024Article
- A data management plan for the NESHIE observational study.Frontiers in genetics · 2023Article
- Qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance.HRB open research · 2023Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND/
aimsThere are increasing pressures for anonymised datasets from clinical trials to be shared across the scientific community, and differing recommendations exist on how to perform anonymisation prior to sharing. We aimed to systematically identify, describe and synthesise existing recommendations for anonymising clinical trial datasets to prepare for data sharing.
methodsWe systematically searched MEDLINE
resultsFifty-nine articles (from 43 studies) were eligible for inclusion. Three distinct themes are emerging: anonymisation, de-identification and pseudonymisation. The most commonly used anonymisation techniques are: removal of direct patient identifiers; and careful evaluation and modification of indirect identifiers to minimise the risk of identification. Anonymised datasets joined with controlled access was the preferred method for data sharing.
conclusionsThere is no single standardised set of recommendations on how to anonymise clinical trial datasets for sharing. However, this systematic review shows a developing consensus on techniques used to achieve anonymisation. Researchers in clinical trials still consider that anonymisation techniques by themselves are insufficient to protect patient privacy, and they need to be paired with controlled access.
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