ArticlePloS one2014
Sharing individual participant data from clinical trials: an opinion survey regarding the establishment of a central repository.
Article in PloS one, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis 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
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 51 citations in OpenAlex.
- Effect of diet and physical activity based interventions in pregnancy on gestational weight gain and pregnancy outcomes: meta-analysis of individual participant data from randomised trials.BMJ (Clinical research ed.) · 2017Pooled it
- Status, use and impact of sharing individual participant data from clinical trials: a scoping review.BMJ open · 2021Article
- Developing a topic-based repository of clinical trial individual patient data: experiences and lessons learned from a pilot project.Systematic reviews · 2021Article
- Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide.BMC medical research methodology · 2020Article
- The Systematic Review Data Repository (SRDR): descriptive characteristics of publicly available data and opportunities for research.Systematic reviews · 2019Article
- Development and use of a flexible data harmonization platform to facilitate the harmonization of individual patient data for meta-analyses.BMC research notes · 2019Article
- Overview and experience of the YODA Project with clinical trial data sharing after 5 years.Scientific data · 2018Article
- Bayesian Multiparameter Evidence Synthesis to Inform Decision Making: A Case Study in Metastatic Hormone-Refractory Prostate Cancer.Medical decision making : an international journal of the Society for Medical Decision Making · 2018Article
- Development of a repository of individual participant data from randomized controlled trials of therapists delivered interventions for low back pain.European journal of pain (London, England) · 2017Article
- Time to consider sharing data extracted from trials included in systematic reviews.Systematic reviews · 2016Article
- Methods for network meta-analysis of continuous outcomes using individual patient data: a case study in acupuncture for chronic pain.BMC medical research methodology · 2016Article
- Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC users.BMJ open · 2016Article
- Best practice for analysis of shared clinical trial data.BMC medical research methodology · 2016Article
- Sharing raw data from clinical trials: what progress since we first asked "Whose data set is it anyway?".Trials · 2016Article
- UK publicly funded Clinical Trials Units supported a controlled access approach to share individual participant data but highlighted concerns.Journal of clinical epidemiology · 2016Article
- Taking Bioinformatics to Systems Medicine.Methods in molecular biology (Clifton, N.J.) · 2016Review
- Sharing Individual Participant Data (IPD) within the Context of the Trial Reporting System (TRS).PLoS medicine · 2016Review
- Individual participant data (IPD) meta-analyses of diagnostic and prognostic modeling studies: guidance on their use.PLoS medicine · 2015Article
- Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.Journal of empirical research on human research ethics : JERHRE · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundCalls have been made for increased access to individual participant data (IPD) from clinical trials, to ensure that complete evidence is available. However, despite the obvious benefits, progress towards this is frustratingly slow. In the meantime, many systematic reviews have already collected IPD from clinical trials. We propose that a central repository for these IPD should be established to ensure that these datasets are safeguarded and made available for use by others, building on the strengths and advantages of the collaborative groups that have been brought together in developing the datasets.
objectiveEvaluate the level of support, and identify major issues, for establishing a central repository of IPD.
designOn-line survey with email reminders.
participants71 reviewers affiliated with the Cochrane Collaboration's IPD Meta-analysis Methods Group were invited to participate.
results30 (42%) invitees responded: 28 (93%) had been involved in an IPD review and 24 (80%) had been involved in a randomised trial. 25 (83%) agreed that a central repository was a good idea and 25 (83%) agreed that they would provide their IPD for central storage. Several benefits of a central repository were noted: safeguarding and standardisation of data, increased efficiency of IPD meta-analyses, knowledge advancement, and facilitating future clinical, and methodological research. The main concerns were gaining permission from trial data owners, uncertainty about the purpose of the repository, potential resource implications, and increased workload for IPD reviewers. Restricted access requiring approval, data security, anonymisation of data, and oversight committees were highlighted as issues under governance of the repository.
conclusionThere is support in this community of IPD reviewers, many of whom are also involved in clinical trials, for storing IPD in a central repository. Results from this survey are informing further work on developing a repository of IPD which is currently underway by our group.
Indexed as
Identifiers
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.