Native Research and Resource Core
本土研究和资源核心
基本信息
- 批准号:9921710
- 负责人:
- 金额:$ 17.1万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 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:
- 关键词:AddressAlaska NativeAlzheimer&aposs DiseaseAlzheimer&aposs disease related dementiaAmerican IndiansCaregiversClinicalCodeCollaborationsCommunitiesCongressesDataEducational workshopEnrollmentFinancial compensationFocus GroupsFundingGoalsGovernmentHealthHelicopterIndividualInterviewKnowledgeLeadLearningLife ExpectancyMagnetic Resonance ImagingMass MediaModelingNational Institute on AgingNative-BornParticipantPerceptionPhasePopulationPovertyProtocols documentationPublicationsQualitative ResearchReportingResearchResearch PersonnelResourcesRewardsRuralServicesTimeTranslatingTribesUniversitiesWashingtonWorkbiological heterogeneitycommunity based participatory researchcommunity involvementdata sharingdesigneffectiveness evaluationexpectationexperienceflyhealth disparityinformantinnovationinterestmembernative elderneglectneuroimagingprogramspromoterrecruitrepositoryrural Americanstribal Nation
项目摘要
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.
摘要
项目成果
期刊论文数量(0)
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{{ truncateString('DEDRA S BUCHWALD', 18)}}的其他基金
Community Health and Aging in Native Groups of Elders Resource Center for Minority Aging Research (CHANGE RCMAR)
土著老年人群体的社区健康和老龄化少数民族老龄化研究资源中心 (CHANGE RCMAR)
- 批准号:
10730130 - 财政年份:2023
- 资助金额:
$ 17.1万 - 项目类别:
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