All of Us Research Program Trans-America Consortium of the HCSRN

我们所有人研究计划 HCSRN 泛美联盟

• 批准号: 10871074
• 负责人: Brian Kenneth Ahmedani
• 金额: $ 1839.3万
• 依托单位: HENRY FORD HEALTH + MICHIGAN STATE UNIVERSITY HEALTH SCIENCES
• 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/10871074
• 关键词: Acceleration; Achievement; Address; Adult; Age; Aging; All of Us Research Program; Area; Asthma; Authorization documentation; Award; Back; Baseline Surveys; Behavioral; Big Data; Big Data Methods; Biological Markers; Biomedical Research; Cancer Research Network; Cardiovascular Diseases; Caring; Cells; Cellular Phone; Child; Clinic; Clinical; Clinical Trials; Clinical Trials Network; Cloud Computing; Collaborations; Communication; Community Networks; Community Outreach; Consent; Data; Databases; Dedications; Dementia; Development; Devices; Diabetes Mellitus; Diagnosis; Diagnostic; Disease; Electronic Health Record; Enrollment; Ensure; Epidemiology; Ethics; Ethnic Origin; Evolution; Explosion; Fostering; Funding; General Population; Genetic; Genetic Research; Genomics; Geographic Locations; Geography; Geriatrics; Goals; Health; Health Personnel; Health Services; Health system; Healthcare; Healthcare Systems; Human; Human Resources; Hypersensitivity; Idaho; Individual; Informatics; Infrastructure; Institution; Institutional Review Boards; Internet; Intervention; Lead; Malignant Neoplasms; Massachusetts; Measurement; Measures; Medicaid; Medical; Medical Research; Medicare; Medicine; Mental Health; Methods; Michigan; Midwestern United States; Minnesota; Mission; Modeling; Modification; Monitor; Movement; National Institute of Drug Abuse; National Institute of Mental Health; North Dakota; Nurses; Obesity; Participant; Patient Self-Report; Patients; Pattern; Pediatric Hospitals; Pediatrics; Performance; Philosophy; Population; Population Heterogeneity; Precision Health; Preventive; Preventive measure; Process; Program Sustainability; Prospective Studies; Public Health; Public Health Informatics; Publications; Race; Recording of previous events; Research; Research Design; Research Personnel; Research Project Grants; Research Training; Resources; Sample Size; Sampling; Science; Scientist; Sentinel; Site; Specialist; Subgroup; Surveys; System; Texas; Time; Underrepresented Populations; United States National Institutes of Health; Universities; Variant; Veterans; Wisconsin; Work; Writing; aged; biobank; case control; chronic pain; cohort; community engagement; cost; data access; data streams; design; disease classification; electronic health record system; epidemiology study; experience; follow-up; health plan; improved; individual patient; male; meetings; multi-site trial; outreach; outreach program; participant enrollment; patient engagement; patient oriented; patient outreach; patient population; patient retention; post-pandemic; precision medicine; preference; process improvement; programs; prospective; recruit; research study; social; social health determinants; substance use; systems research; therapy design; tool; volunteer; wearable device; wireless

Abstract The All of Us Research Program (AoURP), which started enrolling participants in 2017, is an ambitious, forward-looking and futuristic national endeavor to create and sustain a research data platform unique in the world, with the ultimate objective of advancing effective health care approaches and interventions that are exquisitely and precisely tailored to individual patients. Known as “Precision Medicine” or “Precision Health” in which preventive measures, diagnoses and treatments are designed specifically for an individual based on their genetics, exposures, biomarkers and personal preferences, the AoURP was envisioned as a mechanism for overcoming a number of significant research barriers in order to accelerate the achievement of this revolutionary goal. The AoURP is specifically designed to address current issues that plague precision medicine/health research efforts, including small sample sizes of cases and population sampling frames, inadequate population diversity, limited breadth of data, gaps in patient followup, incompatible data platforms, restricted data access, challenges in obtaining IRB approvals and cost. The research platform of core participants is already approaching that of the successful UK biobank, but is far more diverse in terms of population age, race, ethnicity and geography. Electronic health records of core participants are uploaded as well as genetics, physical measurement and survey data. Over 5400 researchers are already registered on the platform. Investigators from six integrated delivery networks spanning six states (MA, MI, MN, ND, TX, WI) of the Health Care Systems Research Network, Henry Ford Health and Corewell Health, Baylor Scott & White, Essentia Health, Univ Massachusetts/Reliant Medical Group, and HealthPartners, established the All of Us Trans-America Consortium for the HCSRN (TACH) to support the mission of the AoURP. Funded in 2016, TACH shares the undergirding philosophy of the NIH and AoURP and has demonstrated this through our work during the last 6+ years. We continue to have the scientists and staff, resources and experience to contribute to growing and sustaining the program and using the AoURP research platform., In this new award period, the TACH network proposes to expand geographically with respect to inclusion of those historically underserved in biomedical research by adding two new institutions St Louis University / SSM Health and Kaiser-Permanente Northwest, as well as eight more states (OH, IN, SD, NH MO, OK, OR, WA) without current HPO coverage, for the purpose of better serving the program’s objectives. Using organizational performance methods to ensure ethical practices, quality, and continuous improvement to meet the AoURP’s goals and milestones, our Specific Aims are: 1) a. Implement and geographically expand a dedicated AoURP-centered comprehensive patient and community outreach and engagement program and b. Recruit and enroll 12,000 new core participant partners per year, with a focus on individuals historically underrepresented in biomedical research to assure an expansive representation of genetic, environmental, social and disease variation in the AoURP core population; 2) Sustain and expand the established AoURP’s TACH health care provider consortium’s multi-site infrastructure to retain previously and newly enrolled participant partners to ensure that the rich population diversity in the AoURP amplifies and persists and, 3) Actively participate in AoURP committees, provide subject matter expertise, and promote scientific activity using the AoURP research platform within the TACH consortium and through active outreach by TACH investigators to their already established scientific networks through presentations about the program at national meetings.

摘要 All of Us研究计划（AoURP）于2017年开始招募参与者，是一项 一个雄心勃勃的，前瞻性的和未来的国家奋进创造和维持一个研究数据 世界上独一无二的平台，最终目标是促进有效的医疗保健 方法和干预措施，是精致和精确地为个别患者量身定制。 被称为“精准医学”或“精准健康”，其中预防措施，诊断 治疗是根据个人的基因、暴露情况 生物标志物和个人偏好，AoURP被设想为一种机制， 克服一些重大的研究障碍，以加快实现 这个革命性的目标。AoURP是专门为解决困扰当前的问题而设计的 精准医学/卫生研究工作，包括小样本病例和人群 抽样框架、人群多样性不足、数据广度有限、患者随访存在差距不兼容的数据平台，受限的数据访问，获得IRB批准的挑战 和成本核心参与者的研究平台已经接近成功的研究平台。 英国生物库，但在人口年龄，种族，民族和地理方面更加多样化。 上传核心参与者的电子健康记录以及遗传学、物理学、 测量和调查数据。超过5400名研究人员已经在该平台上注册。 来自六个州（MA，MI，MN，ND，TX， WI）、亨利福特健康公司和科瑞威尔健康公司， Baylor Scott &白色，马萨诸塞州/Reliant医疗集团， HealthPartners为HCSRN（TACH）建立了All of Us Trans-America Consortium， 支持AoURP的使命。TACH于2016年获得资助， NIH和AoURP，并通过我们在过去6年多的工作证明了这一点。我们 继续拥有科学家和工作人员，资源和经验，以促进增长， 支持该计划并使用AoURP研究平台。在这个新的奖项期间， TACH网络建议在地理上扩大，包括那些历史上 通过增加两个新的机构圣刘易斯大学/ SSM， 健康和凯撒永久西北，以及八个州（OH，IN，SD，NH MO， OK，OR，WA），但没有当前的HPO覆盖范围，以便更好地服务于该计划的 目标. 使用组织绩效方法确保道德实践、质量和持续 改进，以满足AoURP的目标和里程碑，我们的具体目标是：1）a。实施 并在地理上扩展以AoURP为中心的专用综合患者和社区 外展和参与计划和B.招募并招募12，000名新的核心参与合作伙伴 每年，重点是在生物医学研究中历史上代表性不足的个人， 确保广泛代表遗传，环境，社会和疾病的变化， AoURP核心人口; 2）维持和扩大已建立的AoURP的TACH保健 提供商联盟的多站点基础设施，以保留以前和新注册的 参与者合作伙伴，以确保在AoURP丰富的人口多样性放大， 3）积极参与AoURP委员会，提供主题专业知识，以及 利用TACH联盟内的AoURP研究平台促进科学活动， 通过TACH研究人员积极拓展他们已经建立的科学网络， 通过在国家会议上介绍该计划。