Involving research participants in a pan-European research initiative: the EPAD participant panel experience.

摘要: Background: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such can influence recruitment retention, well researcher experience contribute to decision making studies. However, there are few established methodologies how set up manage participant activities. Further, little discussion do so when dealing with collaborative projects that run across countries operate multiple linguistic regulatory contexts. Methods: In this paper we describe the set-up, running experiences EPAD panel. The study was pan-European cohort aim understand risks for developing Alzheimer’s disease build readiness Phase 2 clinical trials. Due longitudinal nature study, combined enrolment healthy volunteers those mild cognitive impairments, team highlighted crucial success project. project employed nested model, local panels meeting England, France, Scotland, Spain Netherlands, feeding into central were governed by terms reference which adaptable needs. Results: impact has been widespread, varies from feedback on documentation, supporting design media materials representation at national international meetings. Conclusions: have contributed model easily transferable other areas investigating or at-risk populations.