Native Research and Resource Core

摘要 许多美国印第安人和阿拉斯加原住民（AI/AN）以怀疑和不信任的态度看待研究，部分原因是 研究历来是在社区内或对社区进行的，而不是与社区一起进行的。因此，与 土著社区面临着对科学研究的不信任、误解和相互竞争的优先事项的挑战 研究人员和社区成员之间。我们已经表明，显著增加 参与研究包括由部落实体进行研究，让社区参与研究设计， 有一个AI/AN项目负责人，提供补偿，专注于对社区重要的问题， 提供服务。纳入阿尔茨海默病和相关痴呆（ADRD）的差异人群 研究已经成为国家计划的优先事项，以解决阿尔茨海默氏症。然而，临床核心 (CC)的阿尔茨海默病研究中心（ADRC）仅招募了248名（0.06%）30岁以上的AI/AN 年;华盛顿大学ADRC在此期间仅招募了3名AI/AN。CC参与者是 根据单一方案进行评估，如果内容、方法和 薪酬与他们的经验、期望或文化并不突出，也不一致。伙伴关系 土著健康，全国最大的团体之一，在土著社区进行健康研究， 在过去的五年里，我与UW ADRC合作。我们现在准备将AI/AN注册到Native 研究和资源核心（NRRC），开展2项补充活动。在PY 01 -02，我们将进行 与AI/AN利益相关者进行定性研究，以审查标准UW CC协议并确定促进者， 参与的障碍。接下来，CC将帮助设计用于NRRC的替代协议。与国家 美国印第安人大会，最大的服务于部落政府的组织，我们将举办4个研讨会 该组织聚集了调查人员和城市及部落民族代表，讨论部落学术研究 伙伴关系，包括可能的数据共享战略。在PY 03 -05中，我们将使用替代方案 在第一阶段开发，以招募AI/AN进入NRRC。我们的具体目标是：1）进行焦点小组和关键 与城市和农村的人工智能/人工智能老年人和其他利益攸关方进行信息访谈，以了解 促进参与UW CC，并创建保留基本CC的替代NRRC协议 2）与部落-学术伙伴关系中的利益攸关方举办讲习班，探讨 可能允许从NRRC中的AI/AN参与者收集的数据与国家阿尔茨海默氏症 3）评估替代的、文化上知情的协议的有效性，以增加 4）与ADRC核心合作，促进NRRC的参与，评估 协议，进行检查，进行神经成像，并为参与者分配UW识别代码。 NRRC是纠正ADRD研究中AI/AN代表性不足的第一步， 几十年的忽视和最近对多样性的呼吁。这一努力可以成为所有发展成果中心的一种资源和模式。

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.