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)对研究持怀疑和不信任态度，部分原因是 历史上，研究一直是在社区内或社区上进行的，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的关系。我们已经证明，显著增加患病几率的因素 参与研究包括由部落实体进行研究，让社区参与其设计， 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，以及 提供服务。将差异人群纳入阿尔茨海默病和相关痴呆(ADRD) 研究已经成为应对阿尔茨海默病的国家计划的优先事项。然而，临床核心 (CC)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/ANS 在此期间，华盛顿大学ADRC只招收了3名人工智能/ANS。CC参与者为 根据单一协议进行评估，这可能会阻碍注册AI/AN，如果内容、方法和 薪酬与他们的经历、期望或文化并不突出，也不一致。合作伙伴关系 土著健康，全国最大的组织之一，在土著社区进行健康研究， 在过去的5年里，与华盛顿大学亚洲发展研究中心合作。我们现在准备将AI/ANS注册到本地 研究和资源核心(NRRC)，通过开展两项补充活动。在01-02财政年度，我们会进行 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。与国家电视台合作 美国印第安人大会，为部落政府服务的最大组织，我们将主办4个工作坊 召集调查人员、城市和部落国家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03-05财政年度，我们会采用其他方案 在第一阶段开发，将AI/ANS招募到NRRC。我们的具体目标是：1)组织重点小组和关键 与城乡人工智能/人工智能长老和其他利益相关者的线人访谈，以了解障碍和 参与UW CC的推动者，并创建保留基本CC的替代NRRC协议 构成部分；2)与部落-学术伙伴关系的利益攸关方举办讲习班，探讨下列战略 可能允许从NRRC的AI/AN参与者那里收集的数据与国家阿尔茨海默氏症患者共享 协调中心；3)评估替代的、了解文化的协议的有效性，以提高 AI/AN招募到NRRC；以及4)与ADRC核心合作，促进NRRC的参与，评估 治疗方案，进行检查，进行神经成像，并为参与者分配UW识别代码。 NRRC是纠正人工智能/ANS在ADRD研究中代表性不足的第一步，解决 几十年的忽视和最近对多样性的呼吁。这一努力可以作为所有亚洲区域发展中心的资源和模式。

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.