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IntroductionClinical research in Alzheimer's disease (AD) lacks cohort diversity despite being a global health crisis. The Asian Cohort for Alzheimer's Disease (ACAD) was formed to address underrepresentation of Asians in research, and limited understanding of how genetics and non-genetic/lifestyle factors impact this multi-ethnic population.MethodsThe ACAD started fully recruiting in October 2021 with one central coordination site, eight recruitment sites, and two analysis sites. We developed a comprehensive study protocol for outreach and recruitment, an extensive data collection packet, and a centralized data management system, in English, Chinese, Korean, and Vietnamese.ResultsACAD has recruited 606 participants with an additional 900 expressing interest in enrollment since program inception.DiscussionACAD's traction indicates the feasibility of recruiting Asians for clinical research to enhance understanding of AD risk factors. ACAD will recruit > 5000 participants to identify genetic and non-genetic/lifestyle AD risk factors, establish blood biomarker levels for AD diagnosis, and facilitate clinical trial readiness.HighlightsThe Asian Cohort for Alzheimer's Disease (ACAD) promotes awareness of under-investment in clinical research for Asians. We are recruiting Asian Americans and Canadians for novel insights into Alzheimer's disease. We describe culturally appropriate recruitment strategies and data collection protocol. ACAD addresses challenges of recruitment from heterogeneous Asian subcommunities. We aim to implement a successful recruitment program that enrolls across three Asian subcommunities.

Brain somatic gene recombination (SGR) and the endogenous reverse transcriptases (RTs) that produce it have been implicated in the etiology of Alzheimer's disease (AD), suggesting RT inhibitors as novel prophylactics or therapeutics. This retrospective, proof-of-concept study evaluated the incidence of AD in people with human immunodeficiency virus (HIV) with or without exposure to nucleoside RT inhibitors (NRTIs) using de-identified medical claims data. Eligible participants were aged ≥60 years, without pre-existing AD diagnoses, and pursued medical services in the United States from October 2015 to September 2016. Cohorts 1 (N = 46,218) and 2 (N = 32,923) had HIV. Cohort 1 had prescription claims for at least one NRTI within the exposure period; Cohort 2 did not. Cohort 3 (N = 150,819) had medical claims for the common cold without evidence of HIV or antiretroviral therapy. The cumulative incidence of new AD cases over the ensuing 2.75-year observation period was lowest in patients with NRTI exposure and highest in controls. Age- and sex-adjusted hazard ratios showed a significantly decreased risk for AD in Cohort 1 compared with Cohorts 2 (HR 0.88, p < 0.05) and 3 (HR 0.84, p < 0.05). Sub-grouping identified a decreased AD risk in patients with NRTI exposure but without protease inhibitor (PI) exposure. Prospective clinical trials and the development of next-generation agents targeting brain RTs are warranted. [ABSTRACT FROM AUTHOR]

Background: Despite 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. Method: Community‐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. Result: The 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). Conclusion: ACAD'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. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease (AD) is a leading cause of death worldwide. Despite the global impact, clinical research in AD and, in particular, clinical trials, biomarker and genome‐wide association studies are underrepresented for racial/ethnic minorities such as Asian Americans and Asian Canadians (ASAC). The Asian Cohort for Alzheimer's Disease (ACAD) is the first large AD cohort for ASAC to address this disparity, building on best practices in community recruitment and outreach strategies with the goal of identifying genetic and non‐genetic risk factors of AD in populations of Asian descent. ACAD will include individuals of Chinese, Korean and Vietnamese ancestry, representing the first multi‐cultural Asian cohort analysis for AD. Method: Community‐Based Participatory Research (CBPR) principles are embedded through all activities as a fundamental strategy to increase research participant engagement of ASAC. CBPR engages the community in all phases of research (i.e., recruitment; resource sharing; study design; data interpretation) as a collaborative process between the community and researchers that leverages each other's strengths/assets, and requires commitment to sustainability. ACAD's Recruitment and Outreach Workgroup aims to: a) coordinate and monitor recruitment activities across all 8 recruiting sites in the US and Canada; b) develop and disseminate recruitment and community outreach/education material; c) work with ACAD's community advisory board (CAB) to address community partner needs; d) work with AD and Asian community partners; and e) develop best practices for community outreach in Asian and immigrant populations. Result: We have gathered local/regional/national leaders representing the three target ASAC cultural groups (Chinese, Korean, and Vietnamese) of ACAD as our CAB. Four significant activities thus far include: curation of information for public use; translation of ACAD educational/outreach materials; development and dissemination of social media information; and, identifying outreach and enrollment metrics as enduring documents for the research and community stakeholders. Conclusion: The overarching goal of ACAD is to include this underserved and underrepresented group, reducing health disparities, while increasing our knowledge about the risk of AD among ASAC. Our multifaceted outreach and recruitment strategies will help to optimize ACAD's success in recruitment and engagement with the ASAC community. [ABSTRACT FROM AUTHOR]

Background: As the first large Alzheimer's Disease (AD) genetics cohort for Asians in the United States and Canada, the Asian Cohort for Alzheimer's Disease (ACAD) has adapted existing instruments to collect data on sex, genetics, medical history, and lifestyle risk factors. We hypothesize that any and all of these factors impact AD risk differently for Asians. Initially ACAD focuses on US and Canadian participants of Chinese, Korean, and Vietnamese ancestry. Method: ACAD's Clinical Workgroup reviewed commonly used dementia research questionnaires, including the NACC Uniform Data Set, Religious Order Study, and NIA‐Late‐Onset AD to select, and in some cases adapt, questions that are most appropriate for ACAD. A combination of AD clinical researchers and community outreach specialists reviewed the data collection packet, administration procedures, and consensus diagnosis process for cultural sensitivity without sacrificing scientific rigor to gather non‐genetic and lifestyle risk factor data. Result: We designed the ACAD Data Collection Packet (DCP) to create a friendly dialogue with participants through a socio‐culturally and linguistically sensitive 3‐part process. The DCP consists of some instruments already validated in Chinese, Vietnamese and Korean languages to screen for cognitive impairment (Cognitive Abilities Screening Instrument (CASI) and Modified Mini‐Mental State (3MS)). Part A collects origins, Mediterranean diet compliance, and Clinical Dementia Rating scores. The self‐administered Part B uses an adaptation of the Rush Cognitive Activity Questionnaire on early‐life enrichment. Part C structures the collection of medical history and cognitive testing with CASI vs 3MS, the Common Objects Memory Test, Category (not Letter) Fluency, and the 15‐item Clock Drawing Task. This assessment is designed to be administered either remotely or face to face. Conclusion: Over the next year, we will pilot the ACAD Data Collection Packet, to set a community standard for dementia screening among Asian Americans and Canadians that can support data harmonization across epidemiological studies. While ACAD translation accommodates Chinese, Korean, and Vietnamese at this stage, we look forward to implementing additional major Asian languages. [ABSTRACT FROM AUTHOR]