How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults
Alzheimer's & Dementia: The Journal of the Alzheimer's Association
INTRODUCTION Alzheimer's-focused participant recruitment registries are tools for accelerating enrollment into studies, however, registry members are primarily White women. METHODS We conducted a national online survey of 1501 adults ages 50–80, oversampling for Black and Hispanic/Latino respondents, assessing intention to join a generic “brain health” registry and to join a registry that required specific tasks. RESULTS Intention to join a registry was low (M 3.48, SD 1.77), and lower than intention to join a registry requiring specific tasks. Intention was greatest for registries requiring completing surveys (M 4.70, SD 1.77). Differences in intention were primarily between White women and Black women; differences between other groups were limited to specific tasks required. DISCUSSION The results indicate uncertainty about what a registry is, its purpose, and/or the concept of “brain health.” Using the Reasoned Action Approach (RAA) to develop evidence-based outreach messages describing a registry and required tasks may increase diversity.
This article was originally published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The version of record is available at: https://doi.org/10.1002/alz.13126. © 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
Alzheimer's, diversity, participant, prevention, Reason Action Approach, recruitment, registry
Langbaum, JB, Maloney, E, Hennessy, M, et al. How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults. Alzheimer's Dement. 2023; 1-8. https://doi.org/10.1002/alz.13126