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

摘要 西班牙裔/拉丁裔（H/L）是美国最大的少数民族，比非西班牙裔白人多50%的可能性 患上阿尔茨海默病（AD）。H/L也活得更长，更早出现AD症状，诊断时间更晚， 阶段，并且不太可能被治疗。据预测，美国H/L与阿尔茨海默病有关的生活 到2060年，痴呆症（ADRD）将增加800%以上。尽管H/L占美国人口的17%， 在NIH资助的临床试验参与者中占不到1%，在NIH AD研究中占不到8%。 中心，极大地限制了对差异根本原因的理解。迫切需要增加 招募H/L进入AD研究，但健康素养的差距可能会影响研究参与。没有 让H/L参与解决AD健康素养问题，让更多H/L参与研究的可能性不大。 西班牙裔社区参与老龄化研究（ECHAR）的长期目标 网络是为了解决老龄化和ADRD研究中H/L的有效招募问题。的总体目标 建议的协作、跨学科网络是吸引、教育和激励H/L社区成员 通过解决ADRD相关沟通参与ADRD研究。在一个中心 假设健康素养差维持健康差距，检查和利用社区 知识将为制定有针对性的征聘战略提供信息。鉴于这一复杂的性质，多- 由于这是一个复杂的因素问题，有效的H/L招聘必须包括一个合作的，多学科的方法。 针对既定目标，ECHAR网络利用社区居民的联合力量 和病人/志愿者联络员，卫生机构和社区组织，以及两个研究人员， 大都会地区拥有近120万个H/L。通过使用一种新颖的社区参与方法， 被称为靴子营翻译（BCT），ECHAR旨在1）激励和招募社区成员， 患者/志愿者联络员成为招募基础设施的一部分，2）发展创新社区- 相关的阿尔茨海默氏症相关的认识，教育和招聘材料，和3）支持研究 基础设施和促进H/L个人进入老龄化和ADRD研究的登记。这些目标是在 符合NIA招募和参与ADRD临床研究的国家战略。 到本项目结束时，人道主义援助和重建委员会将：（1）建立并培训社区咨询委员会， （2）编写了重要的、了解文化的、与防治荒漠化和退化有关的材料，并进行了传播和评价 老龄化和ADRD研究的H/L招募策略;（3）发展可持续研究 通过支持健康差距调查人员和试点赠款，加强基础设施的推广。为此， 这项工作将为招募H/L提供见解和有效的策略。

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.