The Engaging Communities of Hispanics for Aging Research (ECHAR) Network

摘要

Abstract Hispanics/Latinos (H/Ls), the largest ethnic minority in the U.S., are 50% likelier than non-Hispanic whites to develop Alzheimer’s disease (AD). H/Ls also live longer, develop AD symptoms earlier, are diagnosed at later stages, and are less likely to be treated. It is projected that U.S. H/Ls living with Alzheimer’s disease related dementias (ADRD) will increase by over 800% by 2060. Despite comprising 17% of the U.S. population, H/Ls represent less than 1% of participants in NIH-funded clinical trials and less than 8% of NIH AD Research Centers, greatly limiting understanding of underlying causes of disparities. There is a critical need to increase recruitment of H/Ls into AD research, but health literacy gaps may impact research participation. Without engaging H/Ls to address AD health literacy, engaging larger numbers of H/Ls into research will be unlikely. The long-term goal of the proposed Engaging Communities of Hispanics for Aging Research (ECHAR) Network is to address effective recruitment of H/Ls into aging and ADRD research. The overall objective of the proposed collaborative, transdisciplinary network is to engage, educate, and motivate H/L community members for participation in ADRD research by addressing ADRD-related communication. Resting on a central hypothesis that poor health literacy sustains health disparities, examining and leveraging community knowledge will inform development of targeted recruitment strategies. Given the nature of this complex, multi- factorial problem, effective recruitment of H/Ls must include a collaborative, multidisciplinary approach. Targeting the stated goal, the ECHAR Network capitalizes on the combined strength of community residents and patient/volunteer liaisons, health agencies and community-based organizations, and researchers in two metro areas home to nearly 1.2 million H/Ls. Through use of a novel community-based participatory method known as Boot Camp Translation (BCT), ECHAR aims to 1) inspire and recruit community members and patient/volunteer liaisons to become part of the recruitment infrastructure, 2) develop innovative community- relevant Alzheimer’s-related awareness, education, and recruitment materials, and 3) support research infrastructure and facilitate enrollment of H/L individuals entering aging and ADRD research. These aims are in line with the NIA National Strategy for Recruitment and Participation in ADRD Clinical Research. By the end of this project, ECHAR will have: (1) established and trained community advisory committees on ADRD; (2) developed key, culturally-informed, ADRD-related materials as well as dissemination and evaluation strategies for H/L recruitment into aging and ADRD research; and (3) developed sustainable research infrastructure to enhance outreach by supporting health disparities investigators and pilot grants. To that end, this work will provide insights and validated strategies to recruit H/Ls.