Enhancing Participation of Historically Minoritized Groups in Alzheimer Disease and Related Dementias Research

加强历史上少数群体对阿尔茨海默病和相关痴呆症研究的参与

• 批准号: 10752461
• 负责人: JOHN MORRIS
• 金额: $ 4.96万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-01 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10752461
• 关键词: Address; Adopted; Advocate; African American; Alaska Native; Alzheimer' s Disease; Alzheimer' s disease related dementia; American Indians; Area; Asian; Behavioral; Biologic Characteristic; Black race; COVID-19 pandemic; Clergy; Clinical; Clinical Research; Committee Members; Communities; Data; Diagnosis; Disease; Educational workshop; Enrollment; Ensure; Ethnic Origin; Foundations; Funding; Health; Health Disparities Research; Heterogeneity; Hispanic; Individual; Language; Latina; Latino; Latinx; Leadership; Letters; Life Cycle Stages; Link; Literature; Minority Groups; Minority Recruitment; Missouri; Names; National Institute on Aging; Not Hispanic or Latino; Outcome; Participant; Persons; Phase; Prevention strategy; Process; Race; Recommendation; Research; Risk; Site; Socioeconomic Status; Translating; Translational Research; United States; Universities; Washington; Woman; Work; cohort; community engagement; demented; design; diversity and inclusion; ethnic difference; experience; follow-up; health equity; improved; member; minority communities; minority engagement; programs; racial difference; recruit; social determinants; social health determinants; structural health determinants; support network; symposium; volunteer

Project Summary/Abstract The national Conference, entitled “Enhancing Participation of Historically Minoritized Groups in Alzheimer Disease and Related Dementias Research”, proposed in this application represents the intentional (but COVID pandemic-delayed) follow-up to the 2018 national Workshop, “African American Participation in Alzheimer Research: Effective Strategies”, held at Washington University (WU) in St. Louis on October 10th, 2018. The Workshop was funded by R13 AG059415 (JC Morris, PI) and was hosted by WU’s Knight Alzheimer Disease Research Center (ADRC). The audience for the 2018 Workshop included representatives from national (e.g., the National Institute on Aging, the Alzheimer’s Association, and the AfricanAmericansAgainstAlzheimer’s Network) and St. Louis community (e.g., the African American Advisory Board for the Knight ADRC, the St. Louis Clergy Coalition, and the St. Louis Chapter of the Links, Inc.) organizations that are committed to improving diversity in research efforts to understand, reliably diagnose, and effectively treat Alzheimer Disease and Related Dementias (ADRD). However, the primary audience was the leadership of each of the NIA- funded ADRCs as the ADRC network supports the clinical cohorts that are recruited, enrolled, assessed, and longitudinally followed to provide the data and biospecimens that are essential for scientific studies in ADRD. The proposed Conference will be held at Washington University in St. Louis on October 12-13, 2023, to address the continuing lack in the ADRCs of coordinated strategies to ensure the appropriate recruitment, engagement, and retention of research participants from historically minoritized populations. There are four Conference objectives: 1) to have the ADRC network adopt uniform definitions, terms, and language for use for minoritized populations in ADRD research; 2) to review new batteries that obtain data on the social determinants of health that contribute to racial and ethnic differences in ADRD; 3) to encourage the ADRC network to address community-initiated research topics; and 4) to have the ADRC network incorporate a uniform framework to enhance the recruitment, engagement, and retention of persons from minoritized groups in ADRD research. To date, the proposed Conference has acceptances from 6 Moderators (2 women; 3 Black, 1 Asian; 1 Hispanic/Latinx) and 22 speakers (15 women; 8 Black, 3 Asian, 1 American Indian/Alaska Native; 2 Hispanic/Latino/x/a). The effective strategies developed by the Conference will be used by the ADRC network but also disseminated to the scientific community at large.

项目概要/摘要 题为“加强历史上少数群体对阿尔茨海默病的参与”的全国会议 本申请中提出的“疾病和相关痴呆症研究”代表了有意的（但新冠肺炎 2018 年国家研讨会“非裔美国人参与阿尔茨海默病”的后续行动 研究：有效策略”，2018 年 10 月 10 日在圣路易斯华盛顿大学 (WU) 举行。 研讨会由 R13 AG059415（JC Morris，PI）资助，由 WU 的 Knight 阿尔茨海默病主办 研究中心（ADRC）。 2018 年研讨会的观众包括来自国家的代表（例如， 美国国家老龄化研究所、阿尔茨海默病协会和非裔美国人抗阿尔茨海默病协会 网络）和圣路易斯社区（例如 Knight ADRC 的非裔美国人咨询委员会、圣路易斯社区） 圣路易斯神职人员联盟和圣路易斯林克斯分会）组织致力于 提高研究工作的多样性，以了解、可靠诊断和有效治疗阿尔茨海默病 和相关痴呆症（ADRD）。然而，主要受众是每个 NIA 的领导层—— 资助 ADRC，因为 ADRC 网络支持招募、登记、评估和评估的临床队列 纵向跟踪提供 ADRD 科学研究所必需的数据和生物样本。 拟议的会议将于 2023 年 10 月 12 日至 13 日在圣路易斯华盛顿大学举行，以 解决 ADRC 持续缺乏协调战略以确保适当招募的问题， 来自历史上少数群体的研究参与者的参与和保留。有四个 会议目标：1）让 ADRC 网络采用统一的定义、术语和语言，用于 ADRD 研究中的少数群体； 2）审查新电池，在社交上获取数据 导致 ADRD 中种族和民族差异的健康决定因素； 3）鼓励ADRC 网络来解决社区发起的研究主题； 4) 让 ADRC 网络纳入 加强少数群体人员的招聘、参与和留用的统一框架 在 ADRD 研究中。迄今为止，提议的会议已获得 6 名主持人（2 名女性；3 名 黑人，1 名亚洲人； 1 名西班牙裔/拉丁裔）和 22 名发言者（15 名女性；8 名黑人、3 名亚洲人、1 名美洲印第安人/阿拉斯加人） 本国的; 2 西班牙裔/拉丁裔/x/a)。会议制定的有效战略将被 ADRC 网络还向整个科学界传播。