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

摘要 少数民族和农村社区居民（农村居民）经历了 最大的健康差距。根据世界卫生组织的定义，健康差距是 与社会、经济和环境因素密切相关的健康结果中可以避免的差异 环境不利。健康差距，美国经济损失超过1万亿美元 每年，由于生物医学研究（UBR）的代表性不足而恶化。国家 医学科学院、食品药品监督管理局（FDA）和其他权威机构 发表了报告，并正在推动战略，以增加种族/族裔群体的参与， 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步骤 以减少健康差距。换言之，这项建议旨在增加种族/族裔的参与， 少数民族和农村居民在历史上最大的精准医疗计划， 我们所有的研究计划中心地带联盟（AoURP-HC）作为医疗保健提供者 美国国立卫生研究院（NIH）All of 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，密苏里州， 内布拉斯加州和爱荷华州的居民加入到历史上最雄心勃勃的精准医疗计划中。的 AoURP-HC将与NIH的AoURP合作，以进一步实现招募100万人的目标。 个人谁反映了美国的多样性，重点是种族/少数民族 群体和农村居民谁是历史上最UBR。不成比例和 COVID-19对种族/少数民族群体和农村居民的灾难性影响带来了紧迫性 努力用UBR人口丰富AoURP。我们的团队在疫情前线， 观察到COVID-19影响的地理和种族/民族差异。为 例如，堪萨斯州戈夫县的COVID-19死亡率是美国最高的， 爱荷华州昆特镇每132名居民中就有1人死于COVID-19，而全国平均水平为 1种族/民族成为COVID-19相关死亡的重要决定因素。 美国的死亡率（75岁以后），调整后的死亡率差异超过3倍 不同种族/族裔群体的发病率（每10万人）。这种不成比例的COVID-19 UBR人群的发病率和死亡率，由遗传，生理，环境， 职业和生活方式因素，将更好地阐明了AoURP。 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之间建立正式的合作伙伴关系，沿着他们的附属机构 医院和诊所。建议的合作将追求四个目标：（1）我们部署一个 一项以指标为驱动的活动将旨在在五年内招募超过30，000名正式参与者，其中50% 将是种族/少数民族群体和农村居民;（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，生物库和联盟指导委员会，以开发 并执行AoURP研究协议;以及（4）我们将遵守AoURP政策， 忠于AoURP核心价值观，积极参与AoURP辅助研究，工作组， 和工作组。根据这些目标，我们将实施一个全面的参与者 参与和保留计划，将参与者视为合作伙伴，并召集参与者 咨询委员会设计和实施方案活动。我们有针对性地招募UBR 人口纳入AoURP将增强我们所有人的地理和种族多样性 队列，提高公众参与精准医学研究，并帮助确保收益 有针对性的治疗和个性化的预防策略，以达到农村人口。

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.