(Alzheimer's & Dementia: The Journal of the Alzheimer's Association, 2023-05-19) Langbaum, Jessica B.; Maloney, Erin; Hennessy, Michael; Harkins, Kristin; Karlawish, Jason; Nosheny, Rachel L.; Bleakley, Amy
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.
