All of Us Research Program Heartland Consortium (AoURP-HC)

我们所有人研究计划中心联盟 (AoURP-HC)

• 批准号: 10871732
• 负责人: Gillian Bartlett-Esquilant
• 金额: $ 635万
• 依托单位: UNIVERSITY OF KANSAS MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10871732
• 关键词: Academic Medical Centers; Academy; Acute Renal Failure with Renal Papillary Necrosis; Address; Advisory Committees; Age; All of Us Research Program; Alzheimer' s Disease; Ancillary Study; Asthma; Biomedical Research; Black Populations; COVID-19; COVID-19 disparity; COVID-19 impact; COVID-19 morbidity; COVID-19 mortality; COVID-19 pandemic; COVID-19 prevention; Cardiovascular Diseases; Cessation of life; Clinics and Hospitals; Collaborations; Communities; County; Data; Death Rate; Disadvantaged; Disease; Economics; Electronic Health Record; Enrollment; Ensure; Ethnic Origin; Ethnic Population; Genetic; Geography; Goals; Health; Health Personnel; Health system; Hospitalization; Individual; Infrastructure; Iowa; Kansas; Link; Longevity; Malignant Neoplasms; Maternal and Child Health; Measures; Medical center; Medicine; Mental Health; Minority Groups; Mission; Missouri; Myocarditis; Nebraska; Not Hispanic or Latino; Occupational; Outcome; Participant; Physiological; Policies; Population; Precision Medicine Initiative; Predisposition; Prevention strategy; Procedures; Process; Protocols documentation; Public Participation; Quality Control; Quality of Care; Quality of life; Race; Recording of previous events; Reduce health disparities; Reporting; Research; Research Project Grants; Research Proposals; Resources; Rural; Rural Community; Rural Population; Secure; Standardization; Substance abuse problem; Technical Expertise; Therapeutic Clinical Trial; United States; United States Food and Drug Administration; United States National Institutes of Health; Universities; Wit; Work; World Health Organization; biobank; cohort; community organizations; cost; data exchange; data warehouse; design; disorder prevention; ethnic disparity; ethnic diversity; ethnic minority; ethnic minority population; experience; geographic disparity; health difference; health disparity; hospital organization; improved; innovation; institutional capacity; lifestyle factors; mortality; pandemic disease; participant enrollment; participant retention; patient engagement; precision medicine; prevention clinical trial; programs; quality assurance; racial disparity; racial minority; racial minority population; racial population; resilience; retention rate; rural dwellers; social; stem; targeted treatment; treatment response; working group

ABSTRACT Racial and ethnic minorities and residents of rural communities (rural residents) experience the greatest health disparities. Health disparities, as defined by the World Health Organization, are plausibly avoidable differences in health outcomes closely linked with social, economic, and environmental disadvantages. Health disparities, which cost the U.S. economy more $1 trillion annually, are worsened by underrepresentation in biomedical research (UBR). The National Academy of Medicine, the Food and Drug Administration (FDA), and other authoritative bodies have issued reports and are promoting strategies to increase the participation of racial/ethnic minorities, rural residents, and other UBR populations in biomedical research as a necessary step to mitigate health disparities. To wit, this proposal aims to increase the participation of racial/ethnic minorities and rural residents in the largest precision medicine initiative in history by incorporating the All of Us Research Program Heartland Consortium (AoURP-HC) as a Healthcare Provider Organization (HPO) into the National Institutes of Health's (NIH) All of Us Research Program (AoURP). The AoURP-HC is a partnership of academic medical centers, hospitals, and community organizations in the central United States that will work together to enroll Kansas, Missouri, Nebraska, and Iowa residents into the most ambitious precision medicine initiative in history. The AoURP-HC will engage with the NIH's AoURP to further the goal of enrolling one million individuals who reflect the diversity of the United States, focusing on racial/ethnic minority groups and rural residents who are historically among the most UBR. The disproportionate and calamitous impact of COVID-19 on racial/ethnic minority groups and rural residents lends urgency to efforts to enrich the AoURP with UBR populations. Our team, while on the pandemic frontlines, observed the geographic and race/ethnicity-based disparities in the impact of COVID-19. For example, Gove County, Kansas, had the highest COVID-19 death rate in the US, and the rural town of Quinter, Iowa, lost 1 in 132 residents to COVID-19, compared to the national average of 1 in 10,000 deaths.1 Race/ethnicity emerged as a significant determinant of COVID-19-related deaths in the US (after age 75 years³), with more than three-fold differences in adjusted mortality rates (per 100,000) among different racial/ethnic groups. This disproportionate COVID-19 morbidity and mortality in UBR populations, underpinned by genetic, physiologic, environmental, occupational, and lifestyle factors, will be better elucidated by the AoURP. The AoURP-HC aims to address the underrepresentation of the central U.S. in the AoURP by establishing a formal partnership among four academic medical centers, along with their affiliated hospitals and clinics. The proposed collaboration will pursue four objectives: (1) we deploy a metrics-driven campaign will aim to enroll >30,000 full participants in five years of whom 50% will be racial ethnic/minority groups and rural residents; (2) we will send electronic health records periodically by means of secured and standardized AoURP IT processes and procedures to the Data and Research Center; (3) we will work collaboratively with the national AoURP infrastructure, including HPOs, the Biobank, and the Consortium Steering Committee, to develop and implement AoURP research protocols; and (4) we will abide by AoURP policies, maintain fidelity to the AoURP core values, and actively participate in AoURP ancillary studies, task forces, and working groups. Pursuant to these objectives, we will implement a comprehensive participant engagement and retention plan that values the participants as partners and convene a Participant Advisory Board to design and implement program activities. Our targeted enrollment of UBR populations into the AoURP will enhance the geographic and ethnic diversity of the All of Us cohort, enhance public participation in precision medicine research, and help to ensure the benefits of targeted therapies and personalized preventative strategies reach rural populations.

抽象的 种族和族裔少数民族以及农村社区（农村居民）的居民经历 最大的健康差异。世界卫生组织定义的健康差异是 与社会，经济和社会，经济和 环境缺点。健康差异，使美国经济损失更多1万亿美元 单独的生物医学研究（UBR）中代表性不足而忘记了。国民 医学院，食品和药物管理局（FDA）和其他权威机构 已经发布了报告，并正在促进策略以增加种族/种族的参与 在生物医学研究中，少数族裔，粗糙的居民和其他UBR人群是必要的步骤 减轻健康差异。智慧，该建议旨在增加种族/种族的参与 少数族裔和粗糙的居民在历史上最大的精密医学计划中 我们所有的研究计划Heartland联盟（AOURP-HC）作为医疗保健提供者 组织（HPO）进入美国国家卫生研究院（NIH）的所有研究计划 （Aourp）。 AOURP-HC是学术医疗中心，医院和社区的合作伙伴关系 美国中部的组织将共同招募密苏里州堪萨斯州 内布拉斯加州和爱荷华州居民成为历史上最雄心勃勃的精密医学倡议。 AOURP-HC将与NIH的AOURP互动，以进一步招募100万 反映美国多样性的个人，专注于种族/族裔少数民族 历史上最巨大的团体和粗糙的居民。不成比例和 COVID-19对种族/族裔少数群体和农村居民的灾难性影响 努力用UBR种群丰富AOURP。我们的团队在大流行前线时， 观察到基于地理和种族/种族的差异在Covid-19的影响中。为了 例如，堪萨斯州的戈夫县在美国的死亡率最高，乡村 爱荷华州Quinter镇，在132名居民中输给了13名居民，而全国平均水平为19 十分之一的死亡中有1个种族/种族作为与19的重要决定者相关的重要决定者 美国死亡（75岁以后），调整死亡率差异超过三倍 不同种族/族裔群体中的费率（每100,000）。这种不成比例的covid-19 UBR种群中的发病率和死亡率，受遗传，生理，环境， Aourp将更好地阐明占领和生活方式因素。 AOURP-HC旨在解决美国中部在AOURP中的代表性不足 在四个学术医疗中心之间建立正式合作伙伴关系，并 医院和诊所。拟议的合作将追求四个目标：（1）我们部署 指标驱动的活动的目标是在五年中注册> 30,000名全面参与者，其中50％ 将是种族/少数群体和粗糙的居民； （2）我们将发送电子健康 定期通过安全和标准化的AOURP IT处理和程序进行记录 数据与研究中心； （3）我们将与国家AOURP合作 基础设施，包括HPO，生物库和财团指导委员会，以发展 并实施AOURP研究协议； （4）我们将遵守AOURP政策，维护 忠于AOURP核心价值，并积极参与AOURP辅助研究，工作队， 和工作组。根据这些目标，我们将实施全面的参与 参与和保留计划将参与者视为合作伙伴和便利的参与者 设计和实施计划活动的咨询委员会。我们有针对性的UBR入学 进入AOURP的人群将增强我们所有人的地理和种族多样性 队列，增强公众参与精密医学研究，并有助于确保收益 有针对性的疗法和个性化预防策略达到了农村人口。