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