A Precision Engagement Approach with Hispanics/Latinos for Alzheimer’s Disease Research: ECHAR-PE

摘要 尽管占美国人口的近20%， 疾病和相关痴呆（AD/ADRD），西班牙裔/拉丁裔（H/Ls）占AD/ADRD的不到10% 研究样本和只有大约1%的AD/ADRD NIH资助的临床试验。H/L不成比例地多 由于几个潜在因素（包括寿命更长），比非H/L更可能患有AD/ADRD; 心血管疾病和高血压等相关风险因素;较低的社会经济资源， 压力，减少获得医疗保健的机会-历史上和系统性的种族主义对社区的产物， 颜色.研究中的有限代表性明显影响了我们描述AD/ADRD临床特征的能力 表型以及我们开发种族/文化上适当的评估和治疗的能力。 迫切需要让文化和语言多样的个人精确参与，例如 H/Ls，用于纳入AD/ADRD精准医学研究和建立可持续的，可共享的， 异构数据资源。 拟议的工作基于一个中心假设，即纳入文化和语言多样性 AD/ADRD研究中的个体需要使用响应需求和价值的定制方法 我们寻求包括的社区（精确参与）。鉴于已知的系统和机构 历史上排除H/L参与AD/ADRD研究的障碍，拟议的工作 采用“直接面向消费者”的混合方法、多学科、精确参与方法， 以社区为基础，文化上的响应。我们将利用我们的参与社区的资源 西班牙裔/拉丁裔老龄化研究网络，该网络与社区建立了关系， 在H/L人口密集的三个城市（德克萨斯州休斯顿;内华达州拉斯维加斯;科罗拉多州丹佛）的合作伙伴， 社区相关语言和向其他H/L传达AD/ADRD消息的方式。 针对所述目标，拟议的工作旨在（1）完善和（2）传播对文化敏感的 多媒体“工具包”，用于吸引和招募西班牙裔/拉丁裔成年人参与AD/ADRD研究， 通过各种方法，包括基于电话的风险计算器，监测其覆盖范围和吸收情况。沿着这些 线，我们的目标是开发一个风险登记册，我们将利用（3）收集行为数据和（4）血液 这些标本将使我们能够开始描述以下关系所需的工作流程和试验数据： 这些变量在不同的H/L样本中。 到拟议项目结束时，我们希望有一个基于证据的，社区参与的，文化上的， 用于将西班牙裔/拉丁裔个体纳入AD/ADRD的响应式参与工具包和风险登记 research.此外，我们期望有一个特征良好的H/L登记册和数据库， 与AD/ADRD相关的因果途径的其他研究。

ABSTRACT Despite comprising nearly 20% of the United States population and being at increased risk for Alzheimer’s disease and related dementias (AD/ADRD), Hispanics/Latinos (H/Ls) comprise less than 10% of AD/ADRD research samples and only about 1% of AD/ADRD NIH-funded clinical trials. H/Ls are disproportionately more likely than non-H/Ls to have AD/ADRD due to several potential factors including longer lifespans; cardiovascular disease and related risk factors like hypertension; lower socioeconomic resources, related stress, and reduced access to healthcare– products of historic and systemic racism against communities of color. Limited representation in research clearly impacts our ability to characterize AD/ADRD clinical phenotypes as well as our ability to develop ethno-racially/culturally appropriate assessments and treatments. There is a critical need for a precision engagement of culturally and linguistically diverse individuals, such as H/Ls, for inclusion in AD/ADRD precision medicine research and establishment of sustainable, shareable, and heterogeneous data resources. The proposed work rests on the central hypothesis that inclusion of culturally and linguistically diverse individuals in AD/ADRD research requires the use of tailored approaches responsive to the needs and values of the communities we seek to include (precision engagement). Given the known systemic and institutional barriers that have historically excluded H/Ls from participating in AD/ADRD research, the proposed work applies a mixed method-, multi-disciplinary, precision engagement approach that is “straight-to-consumer,” community based, and culturally responsive. We will leverage resources from our Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network, which has established relationships with community partners in three cities with dense H/L populations (Houston, TX; Las Vegas, NV; Denver, CO) to identify community relevant language and ways to communicate AD/ADRD messaging to other H/Ls. Targeting the stated goal, the proposed work aims to (1) refine and (2) disseminate a culturally responsive multimedia “toolkit” for use in engaging and recruiting Hispanic/Latino adults into AD/ADRD research, monitoring its reach and uptake via various methods, including a phone-based risk calculator. Along these lines, we aim to develop a risk registry that we will leverage for (3) collection of behavioral data and (4) blood specimens that will allow us the workflow and pilot data necessary to begin characterizing the relationships of these variables in a diverse sample of H/Ls. By the end of the proposed project, we expect to have an evidence based, community engaged, culturally responsive engagement toolkit and risk registry for engaging Hispanic/Latino individuals into AD/ADRD research. Moreover, we expect to have a well-characterized registry of H/Ls and data repository available for additional research studies on causal pathways related to AD/ADRD.