AFRICAN AMERICAN PARTICIPATION IN AD RESEARCH: EFFECTIVE STRATEGIES

项目总结/摘要 虽然16%的美国人口自认为是非洲裔美国人（AA），但AA的比例更低 在阿尔茨海默病和相关痴呆症（ADRD）的研究中，超过6%的研究志愿者。的 在关注ADRD的研究项目中，AA和其他少数民族成员的代表性不足 严重包括充分理解这些疾病的内在异质性的能力。此外，委员会还认为， 这种代表性不足排除了评估诊断算法和 从绝大多数非西班牙裔白色人的研究中制定的治疗和预防策略 群组对不同的人口同样重要。阿尔茨海默病废用中心（ADC）网络， 由国家老龄化研究所（NIA）资助，尚未系统地解决如何成功地 从ADRD研究中代表性不足的群体中招募和保留研究志愿者。 该项目建议所有31个ADC参加一个专门用于开发的研讨会，然后 测试，有效的策略，以改善招募，保留和参与的AA在ADRD research.研讨会将于2018年10月在华盛顿大学医学院举行， 由学校的骑士阿尔茨海默病研究中心（ADRC）主办，31个ADC之一。[Note: 该研讨会专门讨论AA参与，因为AA患阿尔茨海默病的可能性是AA的两倍 疾病痴呆症作为非西班牙裔白人，但在这个研讨会上开发的策略是 预计也与其他代表性不足的群体有关。研讨会旨在鼓励 所有ADC和其他利益相关者参与ADRD研究，包括阿尔茨海默氏症 协会（包括国家办事处和圣路易斯的大密苏里州分会），国家 组织AfricanAmericansAgainstAlzheimersDisease，和NIA。社区参与将是 圣路易斯社区团体（包括非洲人社区团体） 骑士ADRC的美国咨询委员会，圣路易斯链接公司，圣路易斯的神职人员 联盟）和相关华盛顿大学项目的官员（包括多样性办公室和 包容性、社区卫生伙伴关系和研究中心以及健康传播 研究实验室）将是积极的参与者。讲习班的科学方案将包括十个 在少数民族招聘中担任国家领导人; 6名发言人是妇女，5名AA。“最佳做法” 由讲习班制定和评估的信息将分发给ADC网络和科学 以提高机管局参与抗疫研究中心的研究。

Project Summary/Abstract Although 16% of the United States population self-identifies as African American (AA), AAs comprise fewer than 6% of research volunteers in studies of Alzheimer disease and related dementias (ADRD). The under-representation by AAs and members of other minorities in research programs that focus on ADRD seriously comprises the ability to fully understand the inherent heterogeneity of these disorders. Moreover, this under-representation obviates the opportunity to assess whether or not diagnostic algorithms and therapeutic and prevention strategies developed from studies of overwhelmingly non-Hispanic white cohorts are equally relevant for diverse populations. The network of Alzheimer Disuse Centers (ADCs), funded by the National Institute on Aging (NIA), has yet to systematically address how to successfully recruit and retain research volunteers from under-represented groups in studies of ADRD. This Project proposes that all 31 ADCs participate in a Workshop that is dedicated to developing, and then testing, effective strategies to improve the recruitment, retention, and participation of AAs in ADRD research. The Workshop will be held in October, 2018, at Washington University School of Medicine and hosted by the School's Knight Alzheimer Disease Research Center (ADRC), one of the 31 ADCs. [Note: The Workshop specifically addresses AA participation as AAs are twice as likely to develop Alzheimer disease dementia as non-Hispanic whites, but the strategies that are developed in this Workshop are expected also to be relevant for other under-represented groups.] The Workshop is designed to encourage the participation of all ADCs and also other stakeholders in ADRD research, including the Alzheimer's Association (both the national office and the Greater Missouri Chapter in St. Louis), the national organization AfricanAmericansAgainstAlzheimersDisease, and the NIA. Community engagement will be integral to the Workshop deliberations and output, and St. Louis community groups (including the African American Advisory Board of the Knight ADRC, the St. Louis Chapter of Links, Inc., and the St. Louis Clergy Coalition) and officials from relevant Washington University programs (including the Office of Diversity and Inclusion, the Center for Community Health Partnerships and Research, and the Health Communication Research Laboratory) will be active participants. The scientific program of the Workshop will feature ten national leaders in minority recruitment; 6 of the speakers are women and 5 are AA. The “best practices” developed and evaluated by the Workshop will be disseminated to the ADC network and the scientific community at large to enable improved AA participation in ADRC research.