Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

Abstract

Background/Aims: The recruitment of culturally diverse subject populations into research studies, particularly African-Americans (AA), has been the focus of intense interest by many groups. Methods: In this paper, we present the methodology utilized to create a predominantly AA cohort for the longitudinal study of risk factors in Alzheimer’s disease (AD). The underlying strategy was that of identifying geographically diverse clinical venues within South Carolina (SC) where large numbers of AA patients already come to seek medical care. Results: This strategy was successful, although recruitment rates for AA subjects (43.4%) still fell below those for white subjects (70.3%; p = 0.0025). Subject characteristics of AA subjects that chose to enroll were not substantially different from those that declined to participate. The demographic characteristics of this cohort were largely similar to those of the SC Alzheimer Disease Registry, a population-based database. The problems of standardization of subject recruitment and assessment across diverse clinical venues are also addressed. Conclusion: The utilization of geographically diverse sites for research recruitment where minorities already receive medical care is one practical solution to the problem of minority participation in research. Multi-site recruitment to improve minority recruitment can be accomplished with acceptable standardization and inter-rater reliability.

African American Participation in Alzheimer’s Disease Research That Includes Brain Donation

“…However, participation in medical research is becoming increasingly important for African Americans because a number of diseases, including AD, disproportionately affect this population. 7 …”

“…Furthermore, documented differences in health care outcomes exist for African Americans and Caucasian Americans in terms of epidemiology of disease, clinical presentation, and response to treatments. 7 Therefore, continuing research with minorities should be conducted to improve our understanding of variables that influence the prevalence of such diseases across ethnic groups. Such research is also beneficial and necessary in assessing the safety and efficacy of new pharmacological treatments for all diverse populations.…”

“…Offering a flexible schedule and providing transportation if needed eliminates the stress of traveling to clinic sites, a reason many older individuals often give for declining participation. 7 …”

“…Such follow-up activities aid in demonstrating how findings are beneficial and relevant to the African-American community, and they convey appreciation for participation. 7 …”

“…In another study, Bachman, Stuckey, Ebeling, et al 7 used public health care facilities in black communities to reach African Americans for participation in AD research studies. Because potential participants were approached while they sought routine treatment in a familiar setting by medical personnel with whom they had an established relationship, the authors hypothesized lower levels of distrust and increased participation.…”