Dementias Platform UK Clinical Studies and Great Minds register: Protocol of a targeted brain health studies re-contact database
Koychev I., Young S., Holve H., Yehuda MB., Gallacher J.
AbstractIntroductionEfforts to de-risk neurodegenerative research have been hampered by the expense and time required to gather the rich longitudinal data needed for stratified experimental study recruitment. Dementias Platform UK (DPUK) is a public-private partnership that brings together data from over 40 cohorts in a standardised framework, which represents an until now unavailable opportunity to create such a resource through a streamlined brain health re-contact platform based on existing cohorts, as well as prospectively collected data.Methods and analysisThe DPUK re-contact platform consists of an opt-in (Great Minds, GM) and an opt-out component (Clinical Studies register, CSR). GM requires invited DPUK cohort participants to consent to targeted re-contact at the GM website. Participants complete prospective browser- and smartphone-based cognitive tests and are given the option for remote genetic and actigraphy testing. The GM data is linked to the retrospective DPUK cohort dataset, including genotypic and longitudinal phenotypic data. The CSR is a solution for cohorts explicitly allowing targeted re-contact. Approved studies provide pre-screening criteria on the basis of the CSR/GM dataset, and individuals meeting these criteria are offered participation directly (GM) or through the parent DPUK cohort (CSR).Ethics and disseminationThe database was approved by the South Central - Oxford C Research Ethics Committee, reference 18/SC/0268 on the 27th of June 2018 and amended on the 1st of November 2019. The availability of the Register to researchers will be disseminated through DPUK’s official communication channels as well as national and international scientific meetings.Article SummaryStrengths and limitations of this study-Solution for stratified recruitment into brain health studies on the basis of genetics and cross-cohort retrospective phenotypic data-Prospective standardised data collection: medical history, cognition, actigraphy-Explicit consent for re-contact on the basis of perceived dementia risk-Recruitment on the basis of retrospective data limited by data variance between cohorts-Limited scope for recruitment of symptomatic individuals due to need to register interest for research and respond to study offers through digital technology