Recruiting a prospective community cohort to study Alzheimer's disease and structural and social determinants of health among adults racialized as Black: The ARCHES cohort

Author:

Walker Alexis I. B.1,Trani Jean‐Francois2345,Banks Christian F.1,Murphy Samantha A.1,Zha Wenqing1,Williams Monique M.6,Day Gregory S.7,Zhu Yiqi8,Ances Beau M.1,Hill Carl V.9,Hudson Darrell L.23,Babulal Ganesh M.13510

Affiliation:

1. Department of Neurology Washington University School of Medicine St. Louis Missouri USA

2. Brown School Washington University in St. Louis St. Louis Missouri USA

3. Institute of Public Health Washington University St. Louis Missouri USA

4. National Conservatory of Arts and Crafts Paris France

5. Centre for Social Development in Africa Faculty of Humanities University of Johannesburg Auckland Park Johannesburg South Africa

6. Oak Street Health St. Louis Missouri USA

7. Department of Neurology Mayo Clinic in Florida Jacksonville Florida USA

8. School of Social Work Adelphi University Garden City New York USA

9. Alzheimer's Association Chicago Illinois USA

10. Department of Clinical Research and Leadership The George Washington University School of Medicine and Health Sciences Washington District of Columbia USA

Abstract

AbstractINTRODUCTIONThis ongoing, prospective study examines the effectiveness of methods used to successfully recruit and retain 238 Black older adults in a longitudinal, observational Alzheimer's disease (AD) study.METHODSRecruitment strategies included traditional media, established research registries, speaking engagements, community events, and snowball sampling. Participants were asked to complete an annual office testing session, blood‐based biomarker collection, optional one‐time magnetic resonance imaging (MRI) scan, and community workshop.RESULTSWithin the first 22 months of active recruitment, 629 individuals expressed interest in participating, and 238 enrolled in the ongoing study. Of the recruitment methods used, snowball sampling, community events, and speaking engagements were the most effective.DISCUSSIONThe systemic underrepresentation of Black participants in AD research impacts the ability to generalize research findings and determine the effectiveness and safety of disease‐modifying treatments. Research to slow, stop, or prevent AD remains a top priority but requires diversity in sample representation.Highlights Provide flexible appointments in the evening or weekends, offering transportation assistance, and allowing participants to complete study visits at alternative locations, such as senior centers or community centers. Continuously monitor and analyze recruitment data to identify trends, challenges, and opportunities for improvement. Implement targeted strategies to recruit participants who are underrepresented based on sex, gender, or education to increase representation. Diversify the research team to include members who reflect the racial and cultural backgrounds of the target population, to enhance trust and rapport with prospective participants.

Funder

Alzheimer's Association

Publisher

Wiley

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