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Barriers and Facilitators of African American Participation in Alzheimer Disease Biomarker Research

Williams, Monique M. MD, MS* † ‡; Scharff, Darcell P. PhD§; Mathews, Katherine J. MD, MHP, MBA; Hoffsuemmer, Jonathan S. MPH§ ¶; Jackson, Pamela MA, RN* ♯; Morris, John C. MD* ♯ ** ††; Edwards, Dorothy F. PhD‡‡

Alzheimer Disease & Associated Disorders: July-September 2010 - Volume 24 - Issue - p S24-S29
doi: 10.1097/WAD.0b013e3181f14a14
Original Articles
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African Americans experience a greater risk of Alzheimer disease (AD), but are underrepresented in AD research. Our study examined barriers and facilitators of AD research participation among African Americans. Investigators conducted 11 focus groups with African American participants (n=70) who discussed barriers and facilitators to AD research participation including lumbar puncture studies. The moderator and comoderator independently reviewed the transcripts, identified themes, and coded transcripts for analysis. Participants were predominately female (73%) with a mean age of 52 years (range 21 to 86 y). Concerns and attitudes were consistent across education, socioeconomic status, and sex. Mistrust was a fundamental reason for nonparticipation. Additional barriers included insufficient information dissemination in the African American community, inconvenience, and reputation of the researcher and research institution. Barriers to participation in AD biomarker studies were fear of the unknown and adverse effects. Altruism and relevance of research projects to the individual, family members, or the African American community facilitate participation. Increased participation results from relationships with the community that extend beyond immediate research interests, dissemination of research findings, and emphasis on relevance of proposed studies. Pervasive barriers impede African American participation in AD research but can be overcome through a sustained presence in the community.

*Alzheimer's Disease Research Center

Departments of Medicine

Psychiatry

Obstetrics and Gynecology

Neurology

**Pathology and Immunology

††Program in Physical Therapy, Washington University in St. Louis

§St. Louis University School of Public Health

Barnes-Jewish Hospital

‡‡Departments of Kinesiology-Occupational Therapy and Wisconsin Alzheimer's Institute University of Wisconsin-Madison

This study was supported by grants P50AG05681 and P01AG03991 from the National Institute on Aging, 1KL2RR024994, a subproject of 1UL1RR024992-01 from the National Center for Research Resources, a generous gift from the Alan and Edith Wolff Charitable Trust, and the 2004 AAMC Herbert W. Nickens, MD, Faculty Fellowship.

Reprints: Monique M. Williams, MD, Washington University School of Medicine, Division of Geriatrics and Nutritional Science, 4488 Forest Park Boulevard, Suite 201, St. Louis, MO 63108 (e-mail: mwilliam@dom.wustl.edu).

© 2010 Lippincott Williams & Wilkins, Inc.