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Recruiting African American males in Alzheimer's disease education and genetics research
Author(s) -
Starks Takiyah D,
Adams Larry D,
Byfield Grace,
HamiltonNelson Kara L,
Howard Jazmine,
Edwards Christopher,
Scott Aja M,
Lacroix Faina C,
Laux Renee A,
Haines Johnathan L,
Cuccaro Michael L,
Vance Jeffery M,
Mayeux Richard,
Kunkle Brian W,
Reitz Christiane,
Beecham Gary W,
PericakVance Margaret A,
Byrd Goldie S
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.046178
Subject(s) - outreach , gerontology , disease , inclusion (mineral) , population , community engagement , health equity , medicine , demography , psychology , public health , sociology , political science , pathology , environmental health , social psychology , public relations , law
Background Addressing the disparity Late Onset Alzheimer’s disease (LOAD) prevalence among African Americans (AA) requires deliberate inclusion of this population in Alzheimer’s disease (AD) studies. Recruiting AA for research studies remains a significant challenge for AD genetic studies. Recruiting and retaining AA males (AAMs) is an even greater challenge, even when study personnel is AA, many traditional recruitment barriers are removed, and community outreach in AA communities is available and culturally appropriate. In this project, we highlight engagement of African American males in outreach and recruitment in three AD studies, and point to the need for expanded and targeted engagement opportunities for this population. While AA males indicate a willingness to participate equal to women, their actual participation is significantly less and may diminish potential generalization of studies in African Americans. Method We used culturally relevant approaches to educate and build trust within AA communities and made significant contributions to AA participation in AD genomic studies. For this study, we tracked AAM participation in community engagement activities and enrollment in AD genomic research studies over time. Results Over the past 5 years, 22% of the participants surveyed at an annual AA AD conference were AAM. Participation of AAM’s in large genomic studies such as the Research in African American Alzheimer’s Disease Initiative (24%), African American Alzheimer’s Disease study (24%), the largest Genome Wide Association Study, with 5896 total participants (30%), consistently fell below their non‐Hispanic White counterparts. The average participation of NHW males was 41% over the same period. Conclusion We have used culturally relevant strategies to engage AAMs in education and in genomic research studies. Their participation falls far below their representation in the general population and below their NHW counterparts. Implementing evidence‐based strategies that specifically address trust and gender‐specific needs of AAMs will be important in increasing their participation in genomic studies in AD, and thus generalizability of study results.