A New England Enrollment Center for PMI Cohort Program

新英格兰 PMI 队列计划招生中心

• 批准号: 9453746
• 负责人: ELIZABETH W KARLSON
• 金额: $ 342.09万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-27 至 2018-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9453746
• 关键词: Adopted; Adult; Ambulatory Care; Area; Boston; Caring; Catchment Area; Censuses; Clinical Data; Collaborations; Collection; Complement; Consent; Data; Data Reporting; Enrollment; Evaluation; Future; Geography; Goals; Health Personnel; Health Status; Health system; Healthcare Systems; Information Technology; International; Medical center; Minority; Names; Network-based; New England; PMI cohort; Participant; Patient Recruitments; Patients; Performance; Persons; Philosophy; Physicians; Policies; Population; Precision Medicine Initiative; Procedures; Protocols documentation; Recontacts; Recording of previous events; Recruitment Activity; Research; Research Infrastructure; Research Personnel; Research Support; Sampling; Services; Shipping; Ships; Structure; Surveys; Target Populations; Teaching Hospitals; Technology; Testing; Universities; base; biobank; clinical infrastructure; cohort; demographics; innovation; medical schools; meetings; programs; sample collection; transmission process; volunteer

We propose the creation of “Precision Medicine Initiative New England” (PMI-NE), an enrollment center that encompasses two leading health care provider (HPO) organizations: Partners HealthCare System (PHS) and Boston Medical Center (BMC), the primary teaching hospital of Boston University School of Medicine (BU). We will provide essential geographic diversity in the Northeast Census Region of the US by complementing the Middle Atlantic Division (NJ, NY, and PA; covered in the Columbia and Pittsburgh PMC HPOs) with the New England Division (CT, ME, MA, NH, RI, and VT). Together, PHS and BMC serve a catchment area of 14.4 million people including a large and diverse proportion of the 4.4 million living in the greater Boston area, large portions of the New England population, and a worldwide referral base. Over a five-year period, PHS and BMC delivered outpatient care to 2,253,618 patients with 863,429 (38%) meeting our recruitment target population criteria. Our organizations have a long history of collaboratively producing and using common, open-standards information technology (IT) that leverages the health care system for discovery and has been adopted nationally and internationally. PHS has already implemented brisk recruitment of patients (more than 46,000 to date, 2,200 consented per month) into the PHS Biobank with many key components of PMI including broad consent, linkage to EMR, electronic surveys, and recontact. In large cutting-edge projects, we have successfully engaged participants as partners in research and sustained longitudinal engagement using traditional as well as innovative IT approaches. As such, we have already developed and tested the IT and clinical infrastructures that will be central to achieving PMI milestones and can rapidly adopt procedures developed by the PMI Consortium. We have an extensive, successful track record of collaboration and contributions to large-scale national networks, including the PCORNet Clinical Data Research Network based at Harvard (named “SCiLHS”) in which PHS and BMC-BU collaborate, eMERGE, and many others (see Past Performance). Our team, comprising diverse stakeholders (physicians, researchers, IT leaders, participants) will cohere to enroll 10,000 patients (46% minority) in service of the PMI Cohort Program (PMI-CP). In the sections that follow, we describe our approach to establishing our PMI-NE HPO and our contributions to the PMI Consortium. We describe well-defined milestones and metrics over the 12-month period of performance.

我们建议创建“新英格兰精准医学倡议”（PMI-NE），这是一个注册中心， 包括两个领先的医疗保健提供者 (HPO) 组织：Partners HealthCare System (PHS) 和 波士顿医学中心 (BMC) 是波士顿大学医学院 (BU) 的主要教学医院。我们 将通过补充美国东北部人口普查地区提供必要的地理多样性 中大西洋赛区（新泽西州、纽约州和宾夕法尼亚州；涵盖哥伦比亚和匹兹堡 PMC HPO） 英格兰赛区（康涅狄格州、缅因州、马萨诸塞州、新罕布什尔州、罗德岛州和佛蒙特州）。 PHS 和 BMC 共同服务的服务范围为 14.4 百万人口，其中包括居住在大波士顿地区的 440 万人中的很大一部分， 部分新英格兰人口以及全球转介基础。五年期间，PHS 和 BMC 为 2,253,618 名患者提供门诊护理，其中 863,429 名患者 (38%) 达到了我们的招募目标 人口标准。我们的组织在协作生产和使用通用的、 利用医疗保健系统进行发现的开放标准信息技术 (IT)，并已 adopted nationally and internationally. PHS已经开始快速招募患者（超过 迄今为止已有 46,000 人（每月 2,200 人同意）进入 PHS 生物库，其中包含 PMI 的许多关键组成部分，包括 广泛同意、与 EMR 的链接、电子调查和重新联系。在大型尖端项目中，我们有 成功地让参与者成为研究合作伙伴并持续纵向参与 传统和创新的 IT 方法。因此，我们已经开发并测试了 IT 和 临床基础设施对于实现 PMI 里程碑至关重要，并且可以快速采用程序 由 PMI 联盟开发。我们拥有广泛、成功的合作记录 对大型国家网络的贡献，包括基于 PCORNet 临床数据研究网络 哈佛大学（名为“SCiLHS”），PHS 和 BMC-BU 合作，eMERGE 等（参见过去 表现）。我们的团队由不同的利益相关者（医生、研究人员、IT 领导者、参与者）组成 将一致招募 10,000 名患者（46% 少数族裔）参与 PMI 队列计划 (PMI-CP)。在 在接下来的部分中，我们描述了我们建立 PMI-NE HPO 的方法以及我们对 PMI 联盟。我们描述了 12 个月绩效期间明确定义的里程碑和指标。