Developing best practices for outreach and recruitment: Updates from the Asian Cohort for Alzheimer’s disease (ACAD) study

Abstract

AbstractBackgroundDespite investments in AD research to combat this public health crisis, racial/ethnic minorities such as Asian Americans and Asian Canadians (ASACs) remain underrepresented in AD research including clinical trials, biomarker, and genome‐wide association studies. The Asian Cohort for Alzheimer’s Disease (ACAD) is the first large AD cohort for ASACs with a focus on recruiting Chinese, Korean and Vietnamese. We present the outreach and recruitment strategies employed by the ACAD Recruitment and Outreach Workgroup (Workgroup) during the ACAD’s pilot phase.MethodCommunity‐Based Participatory Research (CBPR) principles are embedded through all activities as a fundamental strategy to increase research participant engagement of ASACs. CBPR engages the community in all phases of research (i.e., recruitment; resource sharing; study design; data interpretation). The Workgroup was tasked with a) coordinating and monitoring recruitment activities across all 8 recruiting sites in the US and Canada; b) developing and disseminating recruitment and community outreach/education materials; c) convening the community advisory board (CAB) to elicit feedback on participant referrals, study processes, outreach/recruitment materials and to address community partner needs; d) collaborating with academic and community partners on outreach; and e) developing best practices for community outreach.ResultThe Workgroup developed multilingual and culturally adapted ACAD‐wide outreach, recruitment and retention materials including study flyers, presentation template materials, animated videos, e‐cards, social media accounts and ads. ACAD CAB provided valuable input regarding study procedures and materials as well as promoting ACAD to their respective communities and networks. During the ACAD pilot phase, 26 outreach activities were conducted across sites. Given that ACAD was launched during the COVID‐19 pandemic, many (n = 16) activities were conducted online and some at community centers, clinics, senior apartments, and outdoor events, with an estimated reach of 3,500+ community members. Many (62.5%) events were conducted in English (n = 17), and others in Asian languages such as Cantonese (n = 5), Korean (n = 2), Mandarin (n = 9) and Vietnamese (n = 2).ConclusionACAD’s multifaceted approach to outreach and recruitment aims to optimize community engagement and a step towards representation of ASACs in AD studies. The Workgroup will continue to monitor outreach/recruitment metrics and provide support for overall and site‐specific community engagement needs.