Journal article
Access to routinely collected health data for clinical trials - Review of successful data requests to UK registries
S Lensen, A Macnair, SB Love, V Yorke-Edwards, NM Noor, M Martyn, A Blenkinsop, C Diaz-Montana, G Powell, E Williamson, J Carpenter, MR Sydes
Trials | BMC | Published : 2020
Abstract
Background: Clinical trials generally each collect their own data despite routinely collected health data (RCHD) increasing in quality and breadth. Our aim is to quantify UK-based randomised controlled trials (RCTs) accessing RCHD for participant data, characterise how these data are used and thereby recommend how more trials could use RCHD. Methods: We conducted a systematic review of RCTs accessing RCHD from at least one registry in the UK between 2013 and 2018 for the purposes of informing or supplementing participant data. A list of all registries holding RCHD in the UK was compiled. In cases where registries published release registers, these were searched for RCTs accessing RCHD. Where..
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Awarded by UK Research and Innovation
Funding Acknowledgements
This work was supported by Health Data Research UK, an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities. The work was also supported by Medical Research Council MC_UU_12023/24. The funding bodies had no direct involvement in the design, data collection, analysis and interpretation or in writing the manuscript.