title: The Minority Aging Research Study: ongoing efforts to obtain brain donation in African Americans without dementia.
abstract: The Minority Aging Research Study (MARS) is a longitudinal, epidemiologic cohort study of decline in cognitive function and risk of Alzheimer's disease (AD) in older African Americans, with brain donation after death added as an optional component for those willing to consider organ donation. In this manuscript, we first summarize the study design and methods of MARS. We then provide details of ongoing efforts to achieve neuropathologic data on over 100 African Americans participating in MARS and in three other clinical-pathologic cohort studies at Rush University Medical Center. The results examine strategies for recruiting and consenting African Americans without dementia; (2) efforts to maintain high rates of follow-up participation; (3) strategies for achieving high rates of agreement to brain donation; and (4) the methodology of obtaining rapid brain autopsy at death. The implications of these efforts are discussed.
authors.affiliation: Rush Alzheimer's Disease Center, Rush University Medical Center, 600 S. Paulina, Suite 1038, Chicago, IL 60612, USA. Lisa_L_Barnes@rush.edu
authors.forename: Lisa L
authors.initials: LL
authors.lastname: Barnes
authors.forename: Raj C
authors.initials: RC
authors.lastname: Shah
authors.forename: Neelum T
authors.initials: NT
authors.lastname: Aggarwal
authors.forename: David A
authors.initials: DA
authors.lastname: Bennett
authors.forename: Julie A
authors.initials: JA
authors.lastname: Schneider
mesh_terms: D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D000375:Aging / Q000473:pathology*; D001921:Brain / Q000473:pathology; D003704:Dementia / Q000473:pathology; D016021:Epidemiologic Studies; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D018579:Patient Selection; D012107:Research Design; D014019:Tissue Donors / Q000600:supply & distribution*