Journal article

Access to routinely collected health data for clinical trials - review of successful data requests to UK registries.

Sarah Lensen, Archie Macnair, Sharon B Love, Victoria Yorke-Edwards, Nurulamin M Noor, Meredith Martyn, Alexandra Blenkinsop, Carlos Diaz-Montana, Graham Powell, Elizabeth Williamson, James Carpenter, Matthew R Sydes

Trials | 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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