Native Research and Resource Core

本土研究和资源核心

• 批准号: 9921710
• 负责人: DEDRA S BUCHWALD
• 金额: $ 17.1万
• 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/9921710
• 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; 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 许多美洲印第安人和阿拉斯加原住民 (AI/AN) 对研究持怀疑态度和不信任态度，部分原因是 历史上，研究都是在社区内或针对社区进行的，而不是与社区一起进行的。因此，与 原住民社区面临着对科学研究的不信任、误解和优先事项相互竞争的挑战 研究人员和社区成员之间。我们已经证明，显着增加几率的因素 参与研究包括由部落实体进行研究，让社区参与其设计， 拥有 AI/AN 项目领导，提供报酬，关注对社区重要的问题，以及 提供服务。将差异人群纳入阿尔茨海默病和相关痴呆症 (ADRD) 研究已成为解决阿尔茨海默病国家计划的优先事项。然而，临床核心 阿尔茨海默病研究中心 (ADRC) 的 (CC) 仅招募了 248 名 (0.06%) 30 岁以上的 AI/AN 年;华盛顿大学 ADRC 在此期间仅招收了 3 名 AI/AN。 CC 参与者是 根据单一协议进行评估，如果内容、方法和 薪酬与他们的经历、期望或文化不重要或不相符。合作伙伴关系 Native Health 是全国最大的在原住民社区进行健康研究的团体之一， 过去 5 年与 UW ADRC 合作。我们现在准备将 AI/AN 注册到 Native 中 研究和资源核心 (NRRC) 通过开展 2 项互补活动。在 PY01-02，我们将进行 与 AI/AN 利益相关者进行定性研究，审查标准 UW CC 协议并确定促进者和 参与障碍。接下来，CC 将帮助设计供 NRRC 使用的替代协议。与国家 美国印第安人大会，服务部落政府的最大组织，我们将举办 4 场研讨会 召集调查人员以及城市和部落民族代表讨论部落学术研究 伙伴关系，包括可能的数据共享战略。在 PY03-05 中，我们将使用替代协议 第一阶段开发的目的是将 AI/AN 招募到 NRRC。我们的具体目标是： 1) 开展焦点小组和关键 对城乡 AI/AN 长者和其他利益相关者进行知情访谈，以了解障碍和 参与 UW CC 的推动者并创建保留必要 CC 的替代 NRRC 协议 成分; 2) 与部落学术伙伴关系的利益相关者举办研讨会，探讨以下战略： 可能允许从 NRRC 的 AI/AN 参与者收集的数据与国家阿尔茨海默氏症研究中心共享 协调中心； 3) 评估替代的、文化知情的方案的有效性，以增加 AI/AN 招募入 NRRC； 4) 与 ADRC 核心合作，促进 NRRC 参与、评估 协议、进行检查、进行神经成像并向参与者分配华盛顿大学识别码。 NRRC 是纠正 ADRD 研究中 AI/AN 代表性不足的第一步，解决 几十年来的忽视和最近对多样性的呼吁。这项工作可以作为所有 ADRC 的资源和模型。