Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies
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.
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A frequently cited reason for underrepresentation of certain minority ethnic groups in clinical trials is pervasive mistrust in the healthcare system, often attributed to historical instances of mistreatment and exploitation.
“A frequently cited reason for the underrepresentation of certain minority ethnic groups in clinical trials is a pervasive mistrust in the healthcare system. This is often attributed to historical instances of mistreatment and exploitation.”
From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [9]
The Tuskegee Syphilis study and the Henrietta Lacks incident are examples of unethical and exploitative research.
“Two infamous examples of such unethical and exploitative research are often quoted: the Tuskegee Syphilis study, in which Black men were intentionally denied treatment for syphilis; and the Henrietta Lacks (HeLa) incident, where the patient’s cancer cells were provided to researchers unbeknownst to her.”
From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [9]
A total of 12 included articles were assessed with an MMAT score below 3, including two RCTs, three non-randomised studies, six quantitative descriptive studies and one mixed methods study.
“A total of 12 articles were assessed with a score of below 3. This included two RCTs [61, 66], three non-randomised studies [15, 46, 64], six quantitative descriptive studies [9, 37, 38, 40, 57, 58] and one mixed methods study [60].”
From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [9]
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- Authors
- Cocroft, S., Welsh‐Bohmer, K. A., Plassman, B. L., Chanti‐Ketterl, M., Edmonds, H., Gwyther, L., McCart, M., MacDonald, H., Potter, G., & Burke, J. R.
- Affiliations
- Duke University (US)
- Joseph and Kathleen Bryan Alzheimer's Disease Research Center Duke University Durham North Carolina
- Corresponding author
- Cocroft, Shelytia
- Venue
- Alzheimer's & Dementia
- Publisher
- Wiley
- Published
- 2020-06-16
- Volume
- 16
- Issue
- 8
- Pages
- 1107-1114
- ISSN
- 1552-5260 (ISSN-L)
- 1552-5279
- OpenAlex
- W3035308940
- Cited by
- 16
- References
- 28
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 1
- FWCI
- 0.94
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Alzheimer s & Dementia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Physiology › Alzheimer's disease research and treatments
- Keywords
- Alzheimer's disease, preclinical Alzheimer's disease
- MeSH terms
- Alzheimer Disease, Black or African American, Female, Humans, Male, Registries, Patient Selection, Healthy Volunteers
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