PPIE in clinical trials at scale: analysis of the first 3,250 responses on the POrtal for Patient and Public Engagement in Dementia (POPPED)
Qin, H.; Pointon, L.; Carpenter, J.; Raymont, V.; Dunne, R.; Reeves, S.; Ali, S.; Iqbal, S.; Bonet-Olivares, C.; Whittle, J.; Rizzo, L.; Malhotra, P.; Underwood, B. R.
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INTRODUCTIONPatient and public involvement and engagement (PPIE) is essential for improving research but is often limited in scale. This study explored the potential for large-scale involvement using a web-based approach. METHODSWe created an online portal to collect feedback on dementia research and sought views on the forthcoming UK-based adaptive platform trial testing repurposed drugs for Alzheimers disease (AD-SMART). Participants completed a survey with a ranking task for four anonymized drugs prioritised for inclusion and discrete choice experiments (DCEs) on treatment attributes trade-offs. RESULTSResponses from over 3,250 people across 27 countries and 6 continents strongly supported for the trial. Metformin was the most preferred, followed by Atomoxetine, Isosorbide Mononitrate, and Levetiracetam. Safety ranked highest, followed by evidence of efficacy and convenience. Analyses were stratified by sex, age, and dementia experience. DISCUSSIONWeb-based PPIE can effectively inform dementia research at scale and offers a transferable model for other studies.
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