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
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..View full abstract
Awarded by Medical Research Council
Awarded by HDRUK