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

摘要 我们所有人研究计划(AoURP)于2017年开始招募参与者，是一项 雄心勃勃、前瞻性和未来主义的国家努力创建和维持研究数据 世界上独一无二的平台，其最终目标是促进有效的医疗保健 为个别患者精心量身定制的方法和干预措施。 被称为“精准医学”或“精准健康”中的预防措施、诊断 治疗是根据个人的遗传、暴露、 生物标记物和个人偏好，AoURP被设想为一种 克服一些重大研究障碍，以加速实现 这个革命性的目标。AoURP是专门为解决当前困扰人们的问题而设计的 精准医学/卫生研究努力，包括病例和人口的小样本 抽样框架、不充分的人口多样性、有限的数据广度、患者随访方面的差距、不兼容的数据平台、数据访问受限、在获得IRB批准方面的挑战 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、民族和地理方面要多样化得多。 核心参与者的电子健康记录以及遗传学、体检 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、 Healthcare Systems Research Network，Henry Ford Health和Corewell Health， 贝勒·斯科特和怀特，Essena Health，马萨诸塞州大学/Relant医疗集团，以及 HealthPartners为HCSRN(TACH)建立了我们所有人跨美联盟，以 支持AoURP的使命。Tach成立于2016年，分享了支撑其理念的 并通过我们在过去6年多的工作中证明了这一点。我们 继续拥有科学家和员工、资源和经验，为发展和 支持该计划并使用AoURP研究平台。在这个新的获奖期， Tach Network建议在地理上扩展，将那些历史上 通过增加两个新的圣路易斯大学/SSM机构，在生物医学研究方面服务不足 健康和Kaiser-Permanente西北，以及另外八个州(俄亥俄州，印第安纳州，SD，NH MO， OK，OR，WA)没有当前的HPO覆盖范围，以便更好地服务于计划的 目标。 使用组织绩效方法来确保道德实践、质量和持续 改进为达到AoURP的目标和里程碑，我们的具体目标是：1)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，以及b.招募和招募12,000名新的核心参与伙伴 每年，重点关注在生物医学研究中历史上代表性不足的个人，以 确保基因、环境、社会和疾病变异的广泛代表性 AoURP核心人群；2)维持和扩大AoURP现有的Tach保健 提供商联盟的多站点基础设施将保留以前和新注册的 参与者合作伙伴，以确保AoURP丰富的人口多样性扩大和 坚持和，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 通过让调查人员积极接触他们已经建立的科学网络 通过在全国会议上介绍该计划。

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.