Data and Research Support Center

数据与研究支持中心

• 批准号: 9229610
• 负责人: Joshua C. Denny
• 金额: $ 1512.17万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-07-06 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9229610
• 关键词: Address; Brain; Caliber; Cognitive; Collaborations; Communication; Coupled; Data; Data Set; Development; Discipline; Disease; Distal; Electronic Health Record; Elements; Enrollment; Environment; Generations; Genetic; Goals; Health; Health Personnel; Home environment; Human; Human Resources; Individual; Knowledge; Learning; Link; Methods; Mind; Mission; Modeling; Monitor; Nature; Onset of illness; Outcome; Participant; Population; Precision Medicine Initiative; Privacy; Process; Production; Research; Research Infrastructure; Research Personnel; Research Support; Secure; Security; Services; Site; Source; Staging; Structure; Sum; System; Techniques; Traction; Trust; Vision; abstracting; cohort; crowdsourcing; data access; design; experience; genomic data; improved; innovation; knowledge of results; precision medicine; prevent; programs; research study; skills; support network; tool; volunteer

PLEDGE Abstract The Precision Medicine Initiative’s (PMI’s) overarching goal is to transform our understanding of the factors that contribute to health and disease, and ultimately, to leverage this understanding to information how we prevent and treat disease. This bold objective will be operationalized in the creation of a longitudinal cohort of 1 million individuals. The PMI’s coordinating center (CC) (called Partnership in Learning around Engagement, Data, Genomics, and Environment, or “PLEDGE”) operationalizes this vision, serving as a hub for the PMI Network leading the optimization of participant engagement strategies, robust data infrastructure, facilitative support of researchers, coordination and communication between the diverse stakeholders of the Network, and responsibility for enrollment of the Cohort’s direct volunteers. PLEDGE’s goals are illustrated by four proposed specific aims: 1) Support the network and its Steering Committee to establish, implement, monitor and reach its programmatic goals. Serve as a visible national home for the PMI, representing its mission and value to participants and to health; provide a ‘one stop shop’ storefront for all needs, inquiries, and provision of data access for high caliber research; 2) Enroll a diverse group of highly engaged direct volunteers without sacrificing inclusiveness for quantity; 3) Harmonize technical practices among Healthcare Provider Organizations including data standards, elements, and models, while nurturing innovation from network sites when conformity is not beneficial. Apply stringent privacy and security safeguards; and finally, 4) Generate support for PMI beyond the network’s personnel to continuously incorporate new knowledge and tools, by deploying innovative contests, crowd sourcing, and matchmaking services.

质押摘要 精密医学计划(PMI)的总体目标是改变我们对以下因素的理解 有助于健康和疾病，并最终利用这种理解来提供我们如何预防的信息 治疗疾病。这一大胆的目标将在创建100万人的纵向队列中付诸实施 个人。PMI的协调中心(CC)(称为围绕参与度、数据、 基因组学，和环境，或“承诺”)实现了这一愿景，作为PMI网络的枢纽 引领参与者参与策略的优化、强大的数据基础设施、 研究人员、网络不同利益攸关方之间的协调和沟通，以及 负责队列的直接志愿者的招募工作。承诺的目标通过四项建议得到说明 具体目标：1)支持网络及其指导委员会建立、执行、监测和达到其 规划目标。作为采购经理人指数的有形国家之家，代表其使命和价值 参与者和健康；提供一站式商店，满足所有需求、查询和数据提供 获得高水平的研究；2)招募多样化的高度参与度高的直接志愿者群体，而不牺牲 数量包容性；3)协调医疗保健提供商组织之间的技术实践，包括 数据标准、元素和模型，同时在不符合一致性的情况下从网络站点培育创新 有益的。应用严格的隐私和安全保护措施；最后，4)在 网络人员不断吸收新知识和工具，通过部署创新的竞赛， 众包和婚介服务。