ABOARD Cohort; a national initiative to involve citizens in AD research

Abstract

AbstractBackgroundMany research cohorts consist of selected research populations, and their outcomes may not translate directly to daily life. Patient Reported Outcomes (PROs) provide this information, but data across the entire disease trajectory, from ‘at risk’ to dementia, are lacking. To address this gap, paving the way for value‐based health care, we have set up a Dutch national data collection infrastructure. This initiative called the ABOARD Cohort aims to (i) study the AD disease trajectory using both PROs and medical data, (ii) link to available registry data, and (iii) serve as central platform to initiate additional studies.MethodThe ABOARD Cohort (www.aboard‐cohort.nl) is part of the ABOARD project, a national public‐private partnership with >30 partners. The cohort is an ongoing, participant‐centered data‐collection, focused on PROs, a minimal CRF with relevant medical data, and linkage to existing data sources. Eligible participants with or at‐risk of AD and their care‐partners are recruited directly‐to‐participant, via (social) media and leaflets. Informed consent and annual collection of PROs through questionnaires are facilitated online, on separate platforms. Governance is based on the principle of data‐portability, the participant being owner of their own data. Participants optionally consent for their study data to be linked to e.g. health insurance and medical record data. We ensure active public‐involvement through a dedicated participant panel.ResultIn September 2022, the ABOARD Cohort was launched. In the first 4 months, n = 82participants (mean age 56±16, female 53(65%)) signed up via the study portal. 60(73%) gave consent to link their data to registries. The ABOARD Cohort Panel, consisting of 57 participants recruited via social media, provided input on the (consent) procedure, via surveys and panel discussions. The early phase experiences are now used to optimize procedures prior to a large social media campaign inviting participants in Spring 2023. The narrative of this campaign is that participants can contribute an hour of their time to help Alzheimer’s research (Figure).ConclusionThe ABOARD Cohort lays the foundation for a future with personalized medicine for AD. With this large scale societal initiative, we attempt to involve a large number of Dutch citizens in Alzheimer’s research.