The goal of this project is to establish a centralized research infrastructure that harnesses New York University (NYU) Langone Health?s clinical and community partnerships throughout New York City to strengthen and advance the science of community engagement, recruitment and retention in aging and Alzheimer?s and related dementia (ADRD) research. Despite the tremendous growth in the older adult and elderly population, particularly among racial and ethnic minorities, these individuals are underrepresented in clinical research. Older age participants face challenges that differ from younger age populations in engagement, recruitment and retention in human subjects research. These include concerns about chronic disease complexities, mobility limitations, and cognitive and sensory impairments that may limit access to research opportunities or capacity to consent. As a result, the evidence of what works in healthcare interventions is less generalizable to older populations, particularly for minority and low-income communities despite the recognition of the disproportionate burden of health disparities among these communities. To address these concerns, the NYU Engagement in Longevity and Medicine (ELM) Research Collaborative will evaluate and disseminate best practices in engaging, recruiting and retaining older populations, stimulate the development and testing of innovative community-engaged and technology-based approaches to participant recruitment in clinical and community settings, and strengthen communication and messaging strategies tailored to diverse aging research populations that are inclusive of ADRD communities and representative of the National Institute on Aging?s priority populations. To increase engagement, recruitment, and retention of older age subjects into aging and ADRD research, the NYU ELM Research Collaborative will: 1) establish a centralized infrastructure including community members, clinical researchers, and patient and family stakeholders in aging and ADRD research; 2) analyze and evaluate what is currently known about successful strategies and challenges in recruitment and retention; 3) develop innovative approaches for education and engagement using electronic health record systems and community navigators rooted in the community health worker model; 4) build and deploy a novel training program for research teams using simulation with actors as potential subjects; and 5) develop a broad-based research registry of interested potential subjects reflective of the diversity of the older adult US population. This study will provide immediate benefit to ongoing aging and ADRD clinical trials and substantial support to future trials.

Public Health Relevance

Unprecedented and dramatic population increases and demographic shifts are occurring in older age United States communities motivating the need to accelerate aging research for this population inclusive of those with chronic conditions, Alzheimer?s disease and related dementia. The NYU Engagement in Longevity and Medicine (ELM) Research Collaborative will evaluate, develop, and disseminate best practices in support of increased recruitment and retention of these NIA priority populations. Innovative community-based approaches including the use of community health navigators, simulation training, and electronic medical record direct messaging to patients will engage, educate and increase recruitment and retention of older age subjects for clinical trials and other aging research.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Resource-Related Research Projects (R24)
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Special Emphasis Panel (ZAG1)
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Elliott, Cerise
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New York University
Internal Medicine/Medicine
Schools of Medicine
New York
United States
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