Native Research and Resource Core

本土研究和资源核心

• 批准号: 10171548
• 负责人: DEDRA S BUCHWALD
• 金额: $ 17.09万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-06-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10171548
• 关键词: Address; Alaska Native; Alzheimer' s Disease; Alzheimer' s disease related dementia; American Indians; Caregivers; Clinical; Code; Collaborations; Communities; Congresses; Data; Educational workshop; Enrollment; Financial compensation; Focus Groups; Funding; Goals; Government; Health; Helicopter; Individual; Interview; Knowledge; Lead; Learning; Life Expectancy; Magnetic Resonance Imaging; Mass Media; Modeling; National Institute on Aging; Native-Born; Participant; Perception; Phase; Population; Poverty; Protocols documentation; Publications; Qualitative Research; Reporting; Research; Research Personnel; Resources; Rewards; Rural; Services; Time; Translating; Tribes; Universities; Washington; Work; biological heterogeneity; community based participatory research; community involvement; data sharing; design; distrust; effectiveness evaluation; expectation; experience; fly; health disparity; informant; innovation; interest; member; native elder; neglect; neuroimaging; programs; promoter; recruit; repository; rural Americans; tribal Nation

Abstract Many American Indians and Alaska Natives (AI/ANs) view research with skepticism and mistrust, in part because research has historically been done in or on communities rather than with them. As a result, partnerships with Native communities are challenged by distrust of scientific research, misunderstandings, and competing priorities between researchers and community members. We have shown that factors significantly increasing odds of participation in research include conduct of the study by a tribal entity, involving the community in its design, having an AI/AN project lead, offering compensation, focusing on problems important to the community, and providing services. Inclusion of disparity populations in Alzheimer's disease and related dementias (ADRD) research has emerged as a priority for the National Plan to Address Alzheimer's Disease. Yet, the Clinical Cores (CC) of the Alzheimer's Disease Research Centers (ADRCs) have recruited only 248 (0.06%) AI/ANs over 30+ years; the University of Washington ADRC has enrolled only 3 AI/ANs during this time. CC participants are evaluated according to a single protocol, which may hinder enrolling AI/ANs if the content, approach, and compensation are not salient to, or aligned with, their experiences, expectations, or culture. Partnerships for Native Health, one of the nation's largest groups conducting health research in Native communities, has collaborated with the UW ADRC for the past 5 years. We are now poised to enroll AI/ANs into the Native Research and Resource Core (NRRC) by conducting 2 complementary activities. In PY01-02, we will conduct qualitative research with AI/AN stakeholders to review the standard UW CC protocol and identify facilitators and barriers to participation. Next, the CC will help design alternative protocols for use in the NRRC. With the National Congress on American Indians, the largest organization serving tribal governments, we will host 4 workshops that assemble investigators and urban and tribal nation representatives to discuss tribal-academic research partnerships, including possible strategies for data-sharing. In PY03-05, we will use the alternative protocols developed in Phase 1 to recruit AI/ANs into NRRC. Our Specific Aims are to: 1) Conduct focus groups and key informant interviews with urban and rural AI/AN elders and other stakeholders to understand barriers to and promoters of participation in the UW CC and create alternative NRRC protocols that retain essential CC components; 2) Conduct workshops with stakeholders in tribal-academic partnerships to explore strategies that might allow data collected from AI/AN participants in the NRRC to be shared with the National Alzheimer's Coordinating Center; 3) Evaluate the effectiveness of the alternative, culturally informed protocols for increasing AI/AN recruitment into the NRRC; and 4) Work with ADRC Cores to promote NRRC participation, appraise protocols, conduct examinations, perform neuroimaging, and assign UW identification codes to participants. NRRC is a first step toward remedying the underrepresentation of AI/ANs in ADRD research, addressing decades of neglect and recent calls for diversity. This effort could serve as a resource and a model for all ADRCs.

抽象的 许多美国印第安人和阿拉斯加土著人（AI/ANS）以怀疑和不信任的方式查看研究，部分原因是 从历史上看，研究是在社区中或在社区中进行的，而不是与他们一起进行的。结果，与 对科学研究，误解和竞争优先事项的不信任挑战了土著社区 在研究人员和社区成员之间。我们已经表明，因素显着增加了几率 参与研究包括部落实体的研究，使社区的设计参与， 拥有AI/一个项目负责人，提供薪酬，专注于对社区重要的问题，以及 提供服务。在阿尔茨海默氏病和相关痴呆症（ADRD）中纳入差异人群（ADRD） 研究已成为解决阿尔茨海默氏病的国家计划的优先事项。但是，临床核心 阿尔茨海默氏病研究中心（ADRC）的（CC）仅招募了248（0.06％）AI/ANS 30+ 年;在此期间，华盛顿大学ADRC仅招收了3个AI/ANS。 CC参与者是 根据单个协议进行评估，如果内容，方法和方法 薪酬不太明显或与他们的经验，期望或文化保持一致。合作伙伴关系 本土健康是美国在本地社区进行健康研究的全国最大的群体之一， 过去5年与UW ADRC合作。我们现在准备将AI/ANS注册到本地人 研究和资源核心（NRRC）通过进行2种互补活动。在PY01-02中，我们将进行 与AI/A的定性研究，利益相关者审查标准UW CC协议并确定促进者和 参与的障碍。接下来，CC将帮助设计用于NRRC的替代协议。与国民 美国印第安人国会是为部落政府服务的最大组织，我们将举办4个研讨会 组装研究人员以及城市和部落国家代表讨论部落学术研究 合作伙伴关系，包括可能的数据共享策略。在PY03-05中，我们将使用替代协议 在第1阶段开发以招募AI/ANS中的NRRC。我们的具体目的是：1）进行焦点小组和关键 线人对城市和农村AI/AN长老和其他利益相关者的采访，以了解和 参与UW CC并创建保留必需CC的替代NRRC协议的促进者 成分; 2）与部落学术伙伴关系的利益相关者进行讲习班，以探索策略 可能允许从AI/A/A的NRC参与者收集数据，并与国家阿尔茨海默氏症共享 协调中心； 3）评估替代性，文化知情方案的有效性 AI/招募NRRC； 4）与ADRC核心合作以促进NRRC参与，评估 协议，进行检查，进行神经影像学并将UW标识代码分配给参与者。 NRRC是纠正ADRD研究中AI/ANS代表性不足的第一步 数十年来的忽视和最近呼吁多样性。这项工作可以作为所有ADRC的资源和模型。