Outreach, Recruitment, and Education Core

Massachusetts General Hospital, Boston MA

Investigators

Linked publications, trials & patents

Abstract

REVISED ABSTRACT: ORE Core Abstract: Abstract Research on Alzheimer Disease and Related Disorders (ADRD) has advanced significantly in recent years, with the development of new knowledge and treatments across the ADRD continuum. But lack of education about ADRD in the community contributes to ongoing fear and stigma such that those at risk or living with ADRD often delay seeking care and are reluctant to participate in research, leading to knowledge gaps on the meaning of clinical, fluid, and imaging biomarkers, and on the impact of pharmacological and other treatment modalities on outcomes. Many clinicians also describe low levels of confidence around dementia diagnosis and management, slowing referrals of persons to appropriate resources or research. These issues are particularly marked among Black or African American (hereafter referred to as Black) and Hispanic groups, who are at 2-3- fold higher risk for developing dementia than non-Hispanic Caucasian Americans. The MADRC Outreach, Recruitment and Engagement (ORE) Core will support the overall theme of the MADRC - Understanding Drivers of Clinical Progression through: 1) working with each of the Cores to further expand participation in ADRD clinical research, 2) acquiring new strategies to find ways to bring research into the community; 3) further strengthening community partnerships, and 4) training clinicians, scientists, and research staff in community engaged research to increase dementia knowledge and improve care. It will 1. Contribute to the MADRC’s ability to support and carry out clinical research in ADRD by building, maintaining, and retaining our Research Cohort, working with partner community organizations to increase understanding of dementia and dementia research participation, and disseminating effective recruitment, engagement, and retention strategies; 2: Develop, in partnership with the Clinical, Neuropath, Biomarkers, Data and Imaging Cores, new tools and strategies to bring educational materials and research into the community; 3. Train the next generation in the science of community-engaged research and in identification of at-risk persons or those living with dementia and provision of diagnostic disclosure, and anticipatory guidance based on growing understanding of drivers of disease progression in high-risk communities and minority populations. We will harness input from our Community Advisory Board and other community partners to both recruit and effectively retain participants.