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

基本信息

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
项目类别：
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

项目摘要

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.

抽象的我们所有人研究计划 (AoURP) 于 2017 年开始招募参与者，是一个雄心勃勃、具有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体患者精心定制的方法和干预措施。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遗传、暴露情况专门设计的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，以加速实现这一革命性目标是专门为解决当前困扰的问题而设计的。精准医学/健康研究工作，包括小样本病例和人群抽样框架、人口多样性不足、数据广度有限、患者随访存在差距、数据平台不兼容、数据访问受限、获得 IRB 批准的挑战核心参与者的研究平台已经接近成功者。英国生物银行，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、身体状况超过 5400 名研究人员已在该平台上注册。来自跨越六个州（马萨诸塞州、密歇根州、明尼苏达州、北达科他州、德克萨斯州、 WI）医疗保健系统研究网络、Henry Ford Health 和 Corewell Health， Baylor Scott & White、Essentia Health、马萨诸塞大学/Reliant Medical Group，以及 HealthPartners 为 HCSRN (TACH) 建立了“我们所有人泛美联盟” TACH 于 2016 年资助，支持 AoURP 的使命。 NIH 和 AoURP 的研究成果，并通过我们过去 6 年多的工作证明了这一点。继续拥有科学家和员工、资源和经验，为成长和发展做出贡献维持该计划并使用 AoURP 研究平台。, 在这个新的奖励期内， TACH 网络提议扩大地理范围以纳入历史上的地区通过增加两个新机构，生物医学研究服务不足圣路易斯大学 / SSM Health 和 Kaiser-Permanente 西北地区，以及另外八个州（俄亥俄州、印第安纳州、南达科他州、新罕布什尔州、密苏里州、好的、俄勒冈州、华盛顿州）目前没有 HPO 承保范围，以便更好地服务于该计划目标。使用组织绩效方法来确保道德实践、质量和持续为了实现 AoURP 的目标和里程碑，我们的具体目标是： 1) a. 并在地理上扩大以 AoURP 为中心的专门综合患者和社区外展和参与计划 b. 招募和注册 12,000 名新的核心参与者合作伙伴每年，重点关注历史上在生物医学研究中代表性不足的个人确保遗传、环境、社会和疾病变异的广泛代表性 AoURP 核心人群；2) 维持和扩大已建立的 AoURP 的 TACH 医疗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合作伙伴确保 AoURP 丰富的人口多样性得以扩大和坚持不懈，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，以及通过 TACH 研究人员积极拓展其已建立的科学网络通过在全国会议上介绍该计划。