Evidence mapPaperPMID 32912955Full record

SynthesisBMJ open2020

Data sharing: experience of accessing individual patient data from completed randomised controlled trials in vascular and cognitive medicine.

Polly Scutt, Lisa J Woodhouse, Alan A Montgomery, Philip M Bath

Abstract readMeta-Analysis
In one paragraph

Synthesis in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed, 4 pooled it
field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Reducing self-harm in adolescents: the RISA-IPD comprehensive synopsis.Health technology assessment (Winchester, England) · 2026
    Pooled it
  2. Pooled it
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  4. Pooled it
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Polly ScuttStroke, Division of Clinical Neuroscience, University of Nottingham, Nottingham, UK.
Lisa J WoodhouseStroke, Division of Clinical Neuroscience, University of Nottingham, Nottingham, UK.ORCID 0000-0002-4472-1999
Alan A MontgomeryNottingham Clinical Trials Unit, University of Nottingham, Nottingham, Nottinghamshire, UK.
Philip M BathStroke, Division of Clinical Neuroscience, University of Nottingham, Nottingham, UK philip.bath@nottingham.ac.uk.

Funding

Medical Research Council G0501797
6 · The paper itself

Abstract

objectivesMeta-analysis based on individual patient data (IPD) from randomised trials is superior to using published summary data since it facilitates subgroup and multiple variable analyses. Guidelines and funders expect that researchers share IPD for bona fide analyses, but in practice, this is done variably. Here, we report the experience of obtaining IPD for two collaborative analysis studies.

settingTwo linked studies required IPD from published randomised trials. The leading researchers for eligible trials were approached and asked to share IPD including trial characteristics, patient demographics, baseline clinical data and outcome measures.

participantsParticipants in eligible randomised controlled trials included patients with or at risk of cognitive decline/vascular events. PRIMARY AND SECONDARY OUTCOME MEASURES: Numbers (%) of trials where the leading researcher responded favourably/negatively or did not respond. If negative, reasons behind the response were collected. If positive, methods used to share IPD were recorded.

resultsAcross the two studies, 391 completed trials were identified. Email addresses for researchers were found for 313 (80%) of the trials. One hundred and forty-eight (47%) researchers did not respond despite being sent multiple emails. Following contact, positive initial responses were received from 92 researchers, resulting in IPD being shared for 78 trials. Eighty-seven (28%) researchers declined to share data; justifications were recorded. The median time from first request to accessing data in one study was 241 (IQR 383.3) days. IPD sources included: direct from researcher, via academic trial funders repository and a website requiring remote analysis of commercial data. Where data were shared, a variety of methods were used to transfer data.

conclusionSharing of IPD from trials is desirable and a requirement of many funding bodies. However, accessing IPD faces multiple challenges including refusals to share, delays in access to data and having to perform analyses on a remote website.

trial registrationNot applicable.

Indexed as

Information DisseminationResearch PersonnelCognitionElectronic MailHumansInformation Storage and RetrievalRandomized Controlled Trials as Topicdelirium and cognitive disordersneurologystatistics & research methodsvascular medicine

Identifiers

PMID32912955
PMCPMC7482449

What Socratic holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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 Socratic graph.