Establishment of a Predominantly African-American Cohort for the Study of Alzheimer's Disease : The South Carolina Alzheimer's Disease Clinical Core

• Published in: Dementia and geriatric cognitive disorders 2009, Vol.27 (4), p.329-336
• Main Authors: BACHMAN, David L, STUCKEY, Marilyn, MINTZER, Jacobo E, EBELING, Myla, WAGNER, Mark T, EVANS, W. James, HIRTH, Victor, WALKER, Aljoeson, MEMON, Mohammed, JOGLEKAR, Rajiv, FAISON, Warachal
• Format: Article
• Language: English
• Subjects: African Americans - psychology; African Americans - statistics & numerical data; Aged; Aged, 80 and over; Alzheimer Disease - diagnosis; Alzheimer Disease - epidemiology; Alzheimer Disease - psychology; Biological and medical sciences; Cognition Disorders - diagnosis; Cognition Disorders - epidemiology; Cognition Disorders - psychology; Cohort Studies; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Errors of metabolism; European Continental Ancestry Group; Female; Humans; Lipids (lysosomal enzyme disorders, storage diseases); Longitudinal Studies; Male; Medical sciences; Metabolic diseases; Middle Aged; Neurology; Observer Variation; Patient Selection; Registries; Socioeconomic Factors; South Carolina - epidemiology; Surveys and Questionnaires
• ISSN: 1420-8008; 1421-9824
• DOI: 10.1159/000207446

The recruitment of culturally diverse subject populations into research studies, particularly African-Americans (AA), has been the focus of intense interest by many groups. 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. 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. 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.