Title:The Minority Aging Research Study: Ongoing Efforts to Obtain Brain Donation in African Americans without Dementia
Volume: 9
Issue: 6
Author(s): Lisa L. Barnes, Raj C. Shah, Neelum T. Aggarwal, David A. Bennett and Julie A. Schneider
Affiliation:
Keywords:
Neuropathology, African American, aging, epidemiologic studies, longitudinal, cognitive impairment, neurofibrillary tangles
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.
