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Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies
Author(s) -
Cocroft Shelytia,
WelshBohmer Kathleen A.,
Plassman Brenda L.,
ChantiKetterl Marianne,
Edmonds Henry,
Gwyther Lisa,
McCart Michelle,
MacDonald Heather,
Potter Guy,
Burke James R.
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.12048
Subject(s) - disease , alzheimer's disease , gerontology , psychology , medicine , pathology
The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and “research ready” cohort of cognitively healthy volunteers. Methods The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. Results The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. Discussion We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.