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

摘要 随着人口老龄化，与阿尔茨海默病（AD）和相关痴呆症（ADRD）相关的全球危机 增加，但提供了机会，为发展研究战略，支持的需要， 我们的老龄化社区。在密苏里州，预计65岁及以上的ADRD患者总数将 从2020年的12万辆增加到2025年的13万辆。ADRD中的健康差异开始于承认 健康、结构脆弱性和系统性歧视的社会决定因素的影响。民族主义 因素，阶级歧视，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，以及对科学家的怀疑。 医疗保健系统都是与ADRD研究中招募、入组和保留减少相关的因素。 本研究的主要目的是建立一种新的方法来招募，登记，并保留下- 资源社区纳入ADRD研究注册名为COEQUAL（创造机会，增加 老年痴呆症和相关痴呆症高危人群的健康公平和平等）。我们提出 使用社区和患者参与的研究框架（CPER）来开发和测试高- 产生招募过程，以创建一个研究登记处，用于招募、登记和保留 资源参与ADRD研究。该研究小组由不同的研究人员，社区 成员，家庭和病人的倡导者与华盛顿大学医学院奈特 阿尔茨海默病研究中心（骑士ADRC）在圣路易斯，密苏里州。我们假设创造 一个文化上适当的研究登记将有助于招募，登记，并保留不同的 参与ADRD研究的参与者，以及那些更能代表医学共病的参与者 生活在社区的老年人所经历的。具体目标是： 1.确定和加强目前的做法和资源，以促进高收益的招聘，招生， 并保留代表性不足的参与者进入ADRD研究。 2.确定是否NIA ADORE（阿尔茨海默氏症和痴呆症外展，招聘和参与资源） 材料是准确的，可访问的，可操作的，以满足最佳做法，以增加招聘， 招募和保留资源不足的参与者在ADRD研究。 3.在圣路易斯地区建立和实施COEQUAL研究登记册， 招募、入组和保留n=2000名认知能力不足的资源不足参与者 未受损和受损的ADRD研究。 本研究为资源不足的受试者入组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登记处，扩大现有的成功和骑士的努力 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.