Challenges in community-based recruitment of Alzheimer's disease cases: Experience of the monitoring drug efficacy through multi-omics research initiative in Alzheimer's disease (MEMORI-AD) study

社区招募阿尔茨海默病病例的挑战:阿尔茨海默病多组学药物疗效监测研究计划 (MEMORI-AD) 的经验

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Abstract

BACKGROUND: The Monitoring drug Efficacy through Multi-Omics Research Initiative in Alzheimer's Disease (MEMORI-AD) study aims to characterize drug response to donepezil and memantine in a Filipino cohort with late-onset Alzheimer's disease (AD). To enhance enrollment, community-based dementia screening and recruitment were conducted across barangays in Manila. OBJECTIVE: This study describes the experiences and challenges in community-based recruitment for multi-omics research in vulnerable populations. METHODS: After coordinating with local officials for approval, recruitment targeted residents aged 65 years and above. A public health lecture on dementia was held, followed by rapid screening using the "10 Warning Signs of Dementia" questionnaire by the Alzheimer's Disease Association of the Philippines and the AD-8 Dementia Screening Interview. Eligible participants were invited for clinical screening, including laboratory work, neuropsychological tests, and neuroimaging. Reasons for non-consent and withdrawal were recorded. RESULTS: Of 301 eligible participants, 42 (14.0%) were suspected of dementia and eligible for work-up. Among them, 14 (33.3%) did not consent, 15 (53.6%) initially consented but withdrew, and 13 (46.4%) completed the assessment. Only 2 patients were enrolled. The main cause for non-consent was disinterest (n = 8, 57.1%), followed by unavailability of a legally authorized representative (LAR) (n = 3, 21.4%), which was also the primary reason for withdrawal (n = 9, 60%).​. CONCLUSIONS: Recruitment of vulnerable Filipinos in multi-omics research within a lower-middle income country faced significant barriers, encompassing economic, psychosocial, and health constraints, largely due to disinterest and unavailability of LAR. Further studies on family dynamics, socioeconomic, and cultural factors could offer insights to overcome these recruitment barriers. TRIAL REGISTRATION NUMBER: Philippine Health Research Registry ID PHRR230220-0054116; ClinicalTrials.gov ID NCT05801380.

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