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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.
Langbaum, Jessica B; Maloney, Erin; Hennessy, Michael; Harkins, Kristin; Karlawish, Jason; Nosheny, Rachel L; Bleakley, Amy.
Affiliation
  • Langbaum JB; Alzheimer's Prevention Initiative Department, Banner Alzheimer's Institute, Phoenix, Arizona, USA.
  • Maloney E; Department of Communication, University of Delaware, Newark, Delaware, USA.
  • Hennessy M; Department of Communication, University of Delaware, Newark, Delaware, USA.
  • Harkins K; Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Karlawish J; Departments of Medicine, Medical Ethics and Health Policy, and Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Nosheny RL; Departments of Psychiatry and Behavioral Sciences, Radiology and Biomedical Engineering, University of California, San Francisco, California, USA.
  • Bleakley A; Northern California Institute for Research and Education (NCIRE), Department of Veterans Affairs Medical Center, San Francisco, California, USA.
Alzheimers Dement ; 19(12): 5399-5406, 2023 Dec.
Article in En | MEDLINE | ID: mdl-37204220
ABSTRACT

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.
Subject(s)
Key words

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Ethnicity / Registries / Racial Groups / Alzheimer Disease Limits: Aged / Aged80 / Female / Humans / Male / Middle aged Language: En Journal: Alzheimers Dement Year: 2023 Type: Article Affiliation country: United States

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Ethnicity / Registries / Racial Groups / Alzheimer Disease Limits: Aged / Aged80 / Female / Humans / Male / Middle aged Language: En Journal: Alzheimers Dement Year: 2023 Type: Article Affiliation country: United States