Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Shelytia Cocroft; Kathleen A Welsh-Bohmer; Brenda L Plassman; Marianne Chanti-Ketterl; Henry Edmonds; Lisa Gwyther; Michelle McCart; Heather MacDonald; Guy Potter; James R Burke

doi:10.1002/alz.12048

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Alzheimers Dement. 2020 Aug;16(8):1107-1114. doi: 10.1002/alz.12048. Epub 2020 Jun 16.

Authors

Shelytia Cocroft^{1

2}, Kathleen A Welsh-Bohmer^{2

3

4

5}, Brenda L Plassman^{1

2

3

4}, Marianne Chanti-Ketterl^{2

3}, Henry Edmonds^{2

3}, Lisa Gwyther^{1

2}, Michelle McCart^{2

3}, Heather MacDonald^{2

3}, Guy Potter^{1

2

3}, James R Burke^{2

4}

Affiliations

¹ Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina.
² Joseph and Kathleen Bryan Alzheimer's Disease Research Center, Duke University, Durham, North Carolina.
³ Department of Psychiatry and Behavioral Science, Duke University School of Medicine, Durham, North Carolina.
⁴ Department of Neurology, Duke University School of Medicine, Durham, North Carolina.
⁵ Duke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina.

PMID: 32543781
DOI: 10.1002/alz.12048

Abstract

Introduction: The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and "research ready" cohort of cognitively healthy volunteers.

Methods: The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines.

Results: The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures.

Discussion: We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.

Keywords: cultural diversity; dementia; outreach; race; research registry; retention.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Alzheimer Disease*
Black or African American*
Female
Healthy Volunteers
Humans
Male
Patient Selection*
Registries*