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

摘要 拉美裔/拉美裔(H/L)是美国最大的少数民族，他们比非拉美裔白人更有可能 患上阿尔茨海默病(AD)。H/L寿命更长，出现AD症状的时间更早，确诊的时间更晚 分期，而且不太可能得到治疗。据预测，美国患有阿尔茨海默病的H/L与 到2060年，痴呆症(ADRD)将增加800%以上。尽管占美国人口的17%，但H/L人 代表不到NIH资助的临床试验参与者的1%和不到NIH AD研究的8% 这极大地限制了人们对差异的根本原因的理解。迫切需要增加 将H/L招募到AD研究中，但健康素养差距可能会影响研究参与。如果没有 让H/L来解决AD的健康素养，让更多的H/L参与研究是不太可能的。 拟议的拉美裔社区老龄化研究(ECCAR)的长期目标 该网络的目的是解决人力资源的有效招募问题，使之纳入老龄化和ADRD研究。《公约》的总体目标 建议的协作、跨学科网络旨在吸引、教育和激励H/L社区成员 通过处理与ADRD相关的沟通，参与ADRD研究。躺在一个中央 认为健康素养差会导致健康差距的假设，检查和利用社区 知识将为制定有针对性的招聘战略提供信息。鉴于这一复杂的性质，多- 因素问题，有效的人力资源招聘必须包括协作、多学科的方法。 以既定目标为目标，Echhar网络利用社区居民的联合力量 和患者/志愿者联络机构，卫生机构和社区组织，以及研究人员在两个 大都会地区是近120万H/L的家园。通过使用一种新的基于社区的参与式方法 ECCAR名为训练营翻译(BCT)，旨在1)激励和招募社区成员，并 患者/志愿者联络将成为招募基础设施的一部分，2)发展创新社区- 与阿尔茨海默氏症相关的认识、教育和招聘材料，以及3)支持研究 基础设施和促进H/L个人进入老龄化和ADRD研究的入学。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，埃查尔将有：(1)建立和培训社区咨询委员会， (2)编制关键的、了解文化的、与发展和发展有关的材料，以及传播和评价 H/L招募进入老龄化和不良反应研究的战略；以及(3)开展可持续研究 基础设施，通过支持健康差距调查员和试点赠款来加强外展。为此， 这项工作将为招聘H/L提供洞察力和有效的战略。

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.