Alzheimer’s & Dementia: Translational Research & Clinical Interventions (Apr 2023)

Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board

  • Alex Pena‐Garcia,
  • Ralph Richards,
  • Mollie Richards,
  • Christopher Campbell,
  • Hank Mosley,
  • Joseph Asper,
  • Johanne Eliacin,
  • Angelina Polsinelli,
  • Liana Apostolova,
  • Hugh Hendrie,
  • Andrew Tackett,
  • Caprice Elliott,
  • Sarah Van Heiden,
  • Sujuan Gao,
  • Andrew Saykin,
  • Sophia Wang,
  • IADRC CAB

DOI
https://doi.org/10.1002/trc2.12400
Journal volume & issue
Vol. 9, no. 2
pp. n/a – n/a

Abstract

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Abstract Introduction Community advisory boards (CABs) and researcher partnerships present a promising opportunity to accelerate enrollment of underrepresented groups (URGs). We outline the framework for how the CAB and researchers at the Indiana Alzheimer's Disease Research Center (IADRC) partnered to accelerate URG participation in AD neuroimaging research. Methods CAB and the IADRC researchers partnered to increase the CAB's impact on URG study enrollment through community and research interactions. Community interactions included the CAB collaboratively building a network of URG focused community organizations and collaborating with those URG‐focused organizations to host IADRC outreach and recruitment events. Research interactions included direct impact (CAB members referring themselves or close contacts as participants) and strategic impact, mainly by the CAB working with researchers to develop and refine URG focused outreach and recruitment strategies for IADRC and affiliated studies to increase URG representation. We created a database infrastructure to measure how these interactions impacted URG study enrollment. Results Out of the 354 URG research referrals made to the IADRC between October 2019 and December 2022, 267 referrals were directly referred by the CAB (N = 36) or from community events in which CAB members organized and/or volunteered at (N = 231). Out of these 267 referrals, 34 were enrolled in IADRC and 2 were enrolled in Indiana University Longitudinal Early Onset AD Study (IU LEADS). Of note, both studies require the prospective participants to be willing to do MRI and PET scans. As of December 2022, 30 out of the 34 enrolled participants have received a consensus diagnosis; the majority were cognitively normal (64.7%), with the remainder having mild cognitive impairment (17.6%) or early‐stage AD (2.9%). Discussion The IADRC CAB‐researcher partnership had a measurable impact on the enrollment of African American/Black adults in AD neuroimaging studies. Future studies will need to test whether this conceptual model works for other sites and for other URGs.

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