Outreach, Recruitment and Engagement Core

University Of Washington, Seattle WA

Investigators

Linked publications & trials

Abstract

Outreach, Recruitment and Engagement Core : Project Summary Alzheimer’s Disease and Related Dementias (ADRD)’s incidence, prevalence, risk factors, and clinical features vary by race and ethnicity. However, across ADRD studies, recruitment of diverse research participants remains a formidable challenge. For example, few participants with dementias are from underrepresented groups (URGs) including 8% Latinx, 2% Asian, and <1% from Indigenous and Pacific Islander communities. These shortfalls are likely due to a confluence of barriers, including mistrust of academic research programs, inadequate outreach programs without consideration for culture and language, lack of trained bilingual and bicultural community educators in the research team, and limited knowledge about ADRD research opportunities by URG communities. At the same time, this underrepresentation presents a significant opportunity to build strong bidirectional partnerships with URG communities, caregivers and clinical and community-based organizations serving these communities. In the 2019-2025 cycle, the University of Washington Outreach, Recruitment and Engagement (ORE) Core applied strategies grounded on community-based participatory research (CBPR) approach and established a dynamic community advisory board representing Latinx, Blacks, and Asian American and Pacific Islander communities, developed a culturally and linguistically centered outreach and retention programming, and equipped the team on best practices for community engagement. Working in tandem with the UW ADRC Native Research and Resource Core, these strategies increased representation of URGs in the Clinical Core from <10% in 2020, to currently ≈25% (2024). In the new cycle, ORE Core will focus on growing the community-ADRC partnerships grounded on CBPR, health equity, and intersectionality, to further expand the diversity of the Clinical Core cohort geographically, demographically and clinically, and address the concerns and needs of URG communities for brain donation. We specifically aim to 1) Grow and sustain a durable and equitable community-ADRC collaboration to ensure bidirectional communication of ADRD research and education to patients, caregivers, clinicians, community-based organizations, and public health departments across urban and rural regions; 2) With community partners, promote recruitment and retention of geographically, demographically, and clinically diverse participants into the clinical core using community informed best practices and establishing a referral network of local providers, neighborhood clinics, and community-based organizations; and 3) With community partners, improve readiness of URG communities to ADRD research by addressing barriers to and promoting facilitators of research participation with an emphasis on brain donation. Our proposal builds upon our existing successful community-ADRC partnerships focusing on the model of knowledge exchange through bidirectional learning, co-design of outreach and engagement programs and collective reflection while conducting rigorous science aligned with communities’ priorities.