Evidence map›Paper›PMID 26169841›Full record

ArticleJournal of clinical epidemiology2016

UK publicly funded Clinical Trials Units supported a controlled access approach to share individual participant data but highlighted concerns.

Carolyn Hopkins, Matthew Sydes, Gordon Murray, Kerry Woolfall, Mike Clarke, Paula Williamson, Catrin Tudur Smith

Abstract read
In one paragraph

Article in Journal of clinical epidemiology, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed
–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

24 citing papers in PubMed.

  1. Article
  2. Data resource profile: the virtual international care homes trials archive (VICHTA).International journal of population data science · 2023
    Review
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Review
  9. Review
  10. Article
  11. Article
  12. Review
  13. Article
  14. Data sharing: A new editorial initiative of the International Committee of Medical Journal Editors. Implications for the editors' network.The Egyptian heart journal : (EHJ) : official bulletin of the Egyptian Society of Cardiology · 2017
    Article
  15. Article
  16. Article
  17. Review
  18. Data sharing: A new editorial initiative of the International Committee of Medical Journal Editors : Implications for the Editors' Network.Netherlands heart journal : monthly journal of the Netherlands Society of Cardiology and the Netherlands Heart Foundation · 2017
    Article
  19. Commentary: data sharing in South East Asia.BMJ (Clinical research ed.) · 2016
    Article
  20. Article
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

7 authors.

Carolyn HopkinsMRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Block F Waterhouse Building, 1-5 Brownlow Street, Liverpool, L69 3GL, UK.
Matthew SydesMRC Clinical Trials Unit, University College London, Aviation House, 125 Kingsway, London, WC2B 6NH, UK.
Gordon MurrayCentre for Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh, EH8 9AG, UK.
Kerry WoolfallMRC North West Hub for Trials Methodology Research, Department of Psychological Sciences, Block B Waterhouse Building, Brownlow Street, Liverpool L69 3GL, UK.
Mike ClarkeAll-Ireland Hub for Trials Methodology Research, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Health Sciences Building, 97 Lisburn Road, Belfast, BT9 7BL, UK.
Paula WilliamsonMRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Block F Waterhouse Building, 1-5 Brownlow Street, Liverpool, L69 3GL, UK.
Catrin Tudur SmithMRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Block F Waterhouse Building, 1-5 Brownlow Street, Liverpool, L69 3GL, UK. Electronic address: Cat1@liv.ac.uk.

Funding

Medical Research Council G0800792Medical Research Council G0901530Medical Research Council MC_UU_12023/24Medical Research Council MR/K025635/1Medical Research Council MR/L004933/1Medical Research Council MR/L004933/1- R39Medical Research Council MR/L004933/2
6 · The paper itself

Abstract

objectivesEvaluate current data sharing activities of UK publicly funded Clinical Trial Units (CTUs) and identify good practices and barriers. STUDY DESIGN AND

settingWeb-based survey of Directors of 45 UK Clinical Research Collaboration (UKCRC)-registered CTUs.

resultsTwenty-three (51%) CTUs responded: Five (22%) of these had an established data sharing policy and eight (35%) specifically requested consent to use patient data beyond the scope of the original trial. Fifteen (65%) CTUs had received requests for data, and seven (30%) had made external requests for data in the previous 12 months. CTUs supported the need for increased data sharing activities although concerns were raised about patient identification, misuse of data, and financial burden. Custodianship of clinical trial data and requirements for a CTU to align its policy to their parent institutes were also raised. No CTUs supported the use of an open access model for data sharing.

conclusionThere is support within the publicly funded UKCRC-registered CTUs for data sharing, but many perceived barriers remain. CTUs are currently using a variety of approaches and procedures for sharing data. This survey has informed further work, including development of guidance for publicly funded CTUs, to promote good practice and facilitate data sharing.

Indexed as

Financial SupportClinical Trials as TopicConfidentialityHumansInformation DisseminationOrganizational PolicyResearch DesignSurveys and QuestionnairesUnited KingdomClinical trialClinical trial unitData sharingIndividual participant dataIPDPublicly funded

Identifiers

PMID26169841
PMCPMC4742521

What OpenQuestion holds

Textmetadata
LicenceCC BY
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 OpenQuestion graph.