Leveraging the national infrastructure of trusted organizations to increase representation of Latinos in dementia research

利用受信任组织的国家基础设施来增加拉丁裔在痴呆症研究中的代表性

• 批准号: 10606520
• 负责人: CARL V HILL
• 金额: $ 77.27万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-06-01 至 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10606520
• 关键词: Academia; Acceleration; Address; Administrator; Alzheimer' s Disease; COVID-19; Church; Cities; Clinical Trials; Collaborations; Communities; Consensus; Dementia; Disease; Enrollment; Family; Focus Groups; Fostering; Funding; Geographic Locations; Guidelines; Health; Hispanic; Immigration; Infrastructure; Interdisciplinary Study; Intervention; Interview; Knowledge; Language; Latino; Latino Population; Literature; Malignant Neoplasms; Modeling; Nurses; Participant; Perception; Policy Maker; Population; Privatization; Process; Public Health; Recruitment Activity; Research; Research Personnel; Resource Allocation; Resources; Role; Site; Structure; Time; Trust; Underrepresented Populations; United States; Work; advocacy organizations; community clinic; community engagement; community organizations; cost; ethnic minority; experience; health disparity; implementation science; improved; member; novel; racial minority; recruit; recruitment science; research study

Abstract The underrepresentation of Latinos in dementia research is a public health issue because Latinos are one and a half times as likely to have Alzheimer's disease than Whites, yet less then 1% of study participants in clinical trials on dementia are Latino. This underrepresentation reduces the generalizability of findings and hinders the understanding of the mechanisms of dementia, further widening health disparities. Specific efforts to recruit Latinos in dementia research have leveraged community engagement strategies involving partnerships between researchers and community-based organizations (CBOs). The involvement of trusted CBOs was critical to foster trust in researchers. However, community engagement strategies take a long time to develop and are limited to specific geographic areas (e.g., cities). A missed opportunity is the fact that many trusted CBOs have national reach. Partnering with trusted CBOs that have national reach could potentially provide the infrastructure needed to rapidly implement scalable recruitment strategies nationwide. To leverage the infrastructures of trusted CBOs, we propose to establish a consortium driven by Latino stakeholders and involving national-reach CBOs that are trusted within Latino communities. In preliminary studies we already identified the National Association of Hispanic Nurses (NAHN) and the Alzheimer's Association (ALZ) as relevant CBOs with national reach, that are well-trusted in Latino communities. In this new paradigm, the synergistic endorsements of the NAHN and ALZ will foster Latinos' trust and participation in studies supported by the consortium. We aim to establish a Consortium in 4 sites of a multi-site NIA-funded clinical trial drawing upon the expertise of our multidisciplinary research team, which includes collaborators from the NAHN and the ALZ, a Latino messaging designer and a Latino organizational consultant, plus researchers with expertise in implementation science and community engagement strategies for recruitment in Latino communities. We will use the Collective Impact conceptual model and the Ford et al. recruitment framework to guide our work. Our research has 3 specific aims: 1) Finalize facilitators and barriers to establishing the recruitment consortium, 2) Build and finalize the resources of the recruitment consortium and 3) Establish and evaluate the Consortium recruitment intervention in a large clinical trial. The proposed project will help accelerate needed participation of Latinos in dementia research. Its approach can be replicated in other sites nationwide and adapted to accelerate recruitment of other racial/ethnic minorities and other underrepresented groups into dementia research and in other domains.

摘要 拉丁裔在痴呆症研究中的代表性不足是一个公共卫生问题，因为拉丁裔是一个， 老年痴呆症的可能性是白人的一半，但临床研究中只有不到1%的研究参与者 都是拉丁裔这种代表性不足降低了调查结果的普遍性， 了解痴呆症的机制，进一步扩大健康差距。征聘方面的具体努力 痴呆症研究中的拉丁裔人利用了涉及伙伴关系的社区参与战略 研究人员和社区组织（CBO）之间的关系。值得信赖的社区组织的参与 这对培养对研究人员的信任至关重要。然而，社区参与战略需要很长时间才能制定 并且限于特定的地理区域（例如，城市）。一个错失的机会是，许多人相信 CBO有全国性的影响力。与具有全国影响力的值得信赖的社区组织合作， 在全国范围内迅速实施可扩展的招聘战略所需的基础设施。借力 我们建议建立一个由拉丁裔利益相关者驱动的联盟， 涉及在拉丁裔社区内受到信任的全国性社区组织。在初步研究中，我们已经 确定了西班牙裔护士全国协会（NAHN）和阿尔茨海默氏症协会（ALZ）， 相关的社区组织，在全国范围内，在拉丁美洲社区中受到良好的信任。在这个新的范例中， NAHN和ALZ的协同支持将促进拉丁美洲人对支持研究的信任和参与 财团的。我们的目标是在多中心NIA资助的临床试验图纸的4个中心建立一个联盟 基于我们多学科研究团队的专业知识，其中包括来自NAHN和 ALZ，一个拉丁美洲的信息设计师和拉丁美洲的组织顾问，加上研究人员与专业知识， 实施科学和社区参与战略，在拉丁美洲社区进行招聘。我们将 使用集体影响概念模型和福特等人的招聘框架来指导我们的工作。我们 研究有3个具体目标：1）确定建立招聘联盟的促进者和障碍，2） 建立并最终确定招聘联盟的资源; 3）建立并评估联盟 在大型临床试验中进行招募干预。拟议的项目将有助于加快所需的参与 拉丁裔人参与痴呆症研究其方法可以在全国其他地点复制，并加以调整， 加快招募其他种族/少数民族和其他代表性不足的群体进入痴呆症 研究和其他领域。

项目成果

Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's disease and related dementias.

• DOI: 10.1002/trc2.12331
• 发表时间: 2022
• 期刊: ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS
• 影响因子: 4.8
• 作者: Marquez, David X;Perez, Adriana;Johnson, Julene K;Jaldin, Michelle;Pinto, Juan;Keiser, Sahru;Tran, Thi;Martinez, Paula;Guerrero, Javier;Portacolone, Elena
• 通讯作者: Portacolone, Elena

A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro-meso-macro perspective.

• DOI: 10.1002/trc2.12389
• 发表时间: 2023-04
• 期刊: ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS
• 影响因子: 4.8
• 作者: Aranda, Maria P;Marquez, David X;Gallagher-Thompson, Dolores;Perez, Adriana;Rojas, Julio C;Hill, Carl V;Reyes, Yarissa;Dilworth-Anderson, Peggye;Portacolone, Elena
• 通讯作者: Portacolone, Elena