The COEQUAL Registry: Creating Opportunities to IncreaseHealth Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias.

摘要 随着我们人口的老龄化，与阿尔茨海默病(AD)和相关痴呆(ADRD)相关的全球危机 增加并为制定支持以下需求的研究战略提供了机会 我们老龄化的社区。在密苏里州，预计65岁及以上的ADRD患者总数将 从2020年的12万增加到2025年的13万。ADRD的健康差距始于承认 健康、结构脆弱性和系统性歧视的社会决定因素的影响。鼻咽癌 因素，分类，系统和系统的种族主义，年龄歧视，历史上对科学家的不信任，以及对 医疗保健系统都是导致ADRD研究中招聘、注册和留存减少的因素。 这项研究的主要目标是建立一种新的方法来招聘、登记和保留以下人员- 将社区资源整合到名为COEQUAL的ADRD研究注册中心(创造机会以增加 阿尔茨海默病和相关痴呆症高危人群的健康平等和平等)。我们建议 使用社区和患者参与的研究框架(CPER)来开发和测试 Year招聘流程，为招聘、登记和保留以下人员创建研究注册表 为参与ADRD研究的参与者提供资源。研究团队由不同的研究人员、社区组成 成员、家庭和患者权益倡导者与华盛顿大学医学院奈特合作 密苏里州圣路易斯市的阿尔茨海默病研究中心(Knight ADRC)。我们假设造物主 一个文化上合适的研究登记将有助于招募、登记和保留不同的 ADRD研究的参与者，以及那些更能代表医学合并症的人 由社区生活的老年人经历的。具体目标是： 1.确定和加强当前的做法和资源，以促进高收益的招聘、招生、 并将代表性不足的参与者保留在ADRD研究中。 2.确定NIA是否喜欢(阿尔茨海默氏症和痴呆症外展、招聘和参与资源) 材料准确、可访问和可操作，以满足增加招聘的最佳实践， ADRD研究中资源不足的参与者的登记和保留。 3.在圣路易斯地区建立和实施平等研究登记，以增加 招聘、登记和保留n=2000名认知能力不足的参与者 未受损和受损的纳入ADRD研究。 这项研究为资源不足的参与者参加ADRD研究提供了一个系统的过程。 我们的目标是建立一个可持续的研究注册中心，扩大骑士现有的成功和努力 ADRC将增加ADRD研究的多样性、公平性和包容性。

ABSTRACT As our population ages, the global crisis related to Alzheimer disease (AD) and related dementias (ADRD) increases and yet provides the opportunity for the development of research strategies that support the needs of our aging community. In Missouri, the projected total number of people 65 and older living with ADRD will increase from 120,000 in 2020 to 130,000 by 2025. Health disparities in ADRD begin with acknowledging the impact of social determinants of health, structural vulnerability, and systematic discrimination. Ethnoracial factors, classism, systemic and systematic racism, ageism, historical mistrust of scientists, and suspicion of the healthcare system all are factors linked to reduced recruitment, enrollment, and retention in ADRD research. The main objective of this study is to establish a novel approach to recruiting, enrolling, and retaining under- resourced communities into an ADRD research registry named COEQUAL (Creating Opportunities to Increase Health Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias). We propose using a community and patient engaged research framework (CPER) to develop and test the feasibility of a high- yield recruitment process to create a research registry for recruitment, enrollment, and retention of under- resourced participants into ADRD research. The study team consists of diverse researchers, community members, and family and patient advocates partnered with Washington University School of Medicine Knight Alzheimer’s Disease Research Center (Knight ADRC) in St. Louis, Missouri. We hypothesize that the creation of a culturally appropriate research registry will aid in the recruitment, enrollment, and retention of diverse participants into ADRD research, as well as those who are more representative of the medical comorbidities experienced by community-living older adults. The Specific Aims are to: 1. Identify and enhance current practices and resources to promote high-yield recruitment, enrollment, and retention of underrepresented participants into ADRD research. 2. Determine if NIA ADORE (Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources) materials are accurate, accessible, and actionable for meeting best practices to increase recruitment, enrollment, and retention for under-resourced participants in ADRD research. 3. Establish and implement the COEQUAL research registry in the St. Louis area to increase the recruitment, enrollment, and retention of n=2000 under-resourced participants who are cognitively unimpaired and impaired into ADRD research. This study provides a systematic process for the enrollment of under-resourced participants into ADRD studies. Our goal is to build a sustainable research registry that expands the existing success and efforts of the Knight ADRC to increase diversity, equity, and inclusion in ADRD research.