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.

摘要 少数族裔和农村社区居民(农村居民)经历 最大的健康差距。根据世界卫生组织的定义，健康差距是 看似可以避免的健康结果差异与社会、经济和 环境方面的不利因素。健康差距，使美国经济损失超过1万亿美元 每年，由于在生物医学研究(UBR)中代表性不足而恶化。《国家报》 医学科学院、食品和药物管理局(FDA)和其他权威机构 发布了报告，并正在推动战略，以增加种族/民族的参与 将少数民族、农村居民和其他UBR人群作为生物医学研究的必要步骤 以缓解健康差距。也就是说，这项提议旨在增加种族/民族的参与 少数民族和农村居民在历史上最大的精准医疗倡议中纳入 作为医疗保健提供者的我们所有人研究计划心脏地带联盟(AoURP-HC) 组织(HPO)进入美国国立卫生研究院(NIH)的All Us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。这个 AoURP-HC将与NIH的AoURP接触，以进一步实现招收100万人的目标 反映美国多样性的个人，关注种族/少数民族 从历史上看，这些群体和农村居民是最严重的群体。不成比例的和 新冠肺炎对少数民族和农村居民的灾难性影响迫在眉睫 为用UBR种群丰富AoURP的努力。我们的团队，在疫情前线， 观察了地理和基于种族/族裔的差异对新冠肺炎的影响。为 例如，堪萨斯州的戈夫县的新冠肺炎死亡率是美国最高的，而农村地区 爱荷华州昆特镇的132名居民中有1人死于新冠肺炎，而全国平均水平为 1种族/民族成为新冠肺炎相关疾病的重要决定因素 美国的死亡人数(75岁以后)，调整后死亡率相差三倍以上 不同种族/族裔群体之间的比率(每100,000人)。这不成比例的新冠肺炎 UBR人群的发病率和死亡率，由遗传、生理、环境和 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在AoURP中代表性不足的问题 在四个学术医学中心及其附属机构之间建立正式的合作伙伴关系 医院和诊所。拟议的协作将实现四个目标：(1)我们部署 指标驱动型活动的目标是在五年内招募30,000名正式参与者，其中50% 将是少数民族/少数民族和农村居民；(2)我们将发送电子健康 通过安全和标准化的AoURP IT流程和程序定期记录 数据和研究中心；(3)我们将与国家AoURP合作 基础设施，包括HPO、生物库和财团指导委员会，以制定 并执行AoURP研究协议；以及(4)我们将遵守AoURP政策，维护 忠于AoURP的核心价值观，并积极参与AoURP的辅助研究、工作组、 和工作组。根据这些目标，我们将实施一项全面的参与方 将参与者视为合作伙伴并召集参与者的接洽和保留计划 设计和实施方案活动的顾问委员会。我们的UBR目标招生 人口进入AoURP将增强我们所有人的地理和种族多样性 群策群力，增强公众参与精准医学研究，助力保障效益 有针对性的治疗和个性化的预防战略惠及农村人口。