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 少数民族和农村社区居民（农村居民）经历 根据世界卫生组织的定义，最大的健康差距是 看似可以避免的健康结果差异与社会、经济和社会密切相关 环境劣势，导致美国经济损失超过 1 万亿美元。 每年，由于生物医学研究（UBR）代表性不足而加剧。 美国医学会、美国食品药品监督管理局（FDA）等权威机构 已发布报告并正在推广增加种族/族裔参与的战略 少数民族、农村居民和其他 UBR 人群参与生物医学研究是必要的一步 也就是说，该提案旨在增加种族/族裔的参与。 少数民族和农村居民参与历史上最大的精准医疗计划 作为医疗保健提供者的我们所有人研究计划中心联盟 (AoURP-HC) 组织 (HPO) 纳入美国国立卫生研究院 (NIH) 全民研究计划 (AoURP)。AoURP-HC 是学术医疗中心、医院和社区的合作伙伴。 美国中部的组织将共同努力招收堪萨斯州、密苏里州、 内布拉斯加州和爱荷华州的居民参与了历史上最雄心勃勃的精准医疗计划。 AoURP-HC 将与 NIH 的 AoURP 合作，进一步实现招募 100 万人的目标 反映美国多样性的个人，重点关注少数种族/族裔 历来属于 UBR 最高的群体和农村居民。 COVID-19 对少数种族/族裔群体和农村居民造成的灾难性影响凸显了紧迫性 我们的团队在疫情前线努力丰富 AoURP 人口， 观察了 COVID-19 影响中基于地理和种族/民族的差异。 例如，堪萨斯州戈夫县的 COVID-19 死亡率是美国最高的，而农村地区 爱荷华州昆特镇每 132 名居民中就有 1 人死于 COVID-19，而全国平均水平则为 每 10,000 例死亡中就有 1 例死亡。1 种族/族裔成为与 COVID-19 相关的重要决定因素 美国的死亡人数（75 岁之后），调整后死亡率差异超过三倍 不同种族/族裔群体中的比率（每 100,000 人）中的这种比例不成比例。 UBR 人群的发病率和死亡率受遗传、生理、环境、 AoURP 将更好地阐明职业和生活方式因素。 AoURP-HC 旨在通过以下方式解决美国中部地区在 AoURP 中代表性不足的问题： 在四个学术医疗中心及其隶属关系之间建立正式的合作伙伴关系 医院和诊所拟议的合作将实现四个目标：（1）我们部署一个 指标驱动的活动旨在五年内招募超过 30,000 名正式参与者，其中 50% (2)我们将发送电子健康 通过安全和标准化的 AoURP IT 流程和定期程序进行记录 数据和研究中心；(3) 我们将与国家 AoURP 合作 基础设施，包括 HPO、生物样本库和联盟指导委员会，以开发 并实施 AoURP 研究协议；以及 (4) 我们将遵守 AoURP 政策，维护 忠于 AoURP 核心价值观，并积极参与 AoURP 辅助研究、工作组、 根据这些目标，我们将实施全面的参与者。 重视参与者作为合作伙伴并召集参与者的参与和保留计划 设计和实施我们的 UBR 定向招生计划活动的顾问委员会。 人口加入 AoURP 将增强我们所有人的地理和种族多样性 队列，提高公众对精准医学研究的参与，并有助于确保收益 靶向治疗和个性化预防策略惠及农村人口。