Data and Research Support Center

数据与研究支持中心

• 批准号: 9312321
• 负责人: Joshua C. Denny
• 金额: $ 3184.63万
• 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 2022-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9312321
• 关键词: Address; Algorithms; Brain; Caliber; Cognitive; Collaborations; Communication; Coupled; Data; Data Set; Development; Discipline; Disease; Distal; Electronic Health Record; Elements; Enrollment; Environment; Generations; Genetic; Genomics; Goals; Health; Health Personnel; Home environment; Human; Human Resources; Individual; Knowledge; Learning; Link; Longitudinal cohort; Methods; Mind; Mission; Modeling; Monitor; Nature; Onset of illness; Outcome; Participant; Pharmacology; Population; Precision Medicine Initiative; Privacy; Process; Production; Research; Research Infrastructure; Research Personnel; Research Support; Secure; Security; Services; Site; Source; Structure; Sum; System; Techniques; Traction; Trust; Vision; cohort; crowdsourcing; data access; design; experience; 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.

PLEDGE摘要 精准医学倡议（PMI）的首要目标是改变我们对影响健康的因素的理解， 有助于健康和疾病，并最终利用这种理解来了解我们如何预防 治疗疾病这一大胆的目标将通过建立一个100万人的纵向队列来实现 个体PMI的协调中心（CC）（称为参与、数据、 基因组学和环境，或“PLEDGE”）实现了这一愿景，作为PMI网络的中心 领导参与者参与战略的优化，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 负责招募队列的直接志愿者。该伙伴关系的目标体现在四个拟议目标中： 具体目标：1）支持网络及其指导委员会建立、执行、监测和实现其 方案目标。作为PMI的可见的国家家园，代表其使命和价值， 参与者和健康;为所有需求、查询和提供数据提供“一站式”店面 获得高水平研究的机会; 2）招募多元化的高度参与的直接志愿者群体，而无需牺牲 数量的包容性; 3）协调医疗保健提供者组织之间的技术实践，包括 数据标准、元素和模型，同时在不符合标准的情况下培养网络站点的创新 有利于应用严格的隐私和安全保护措施;最后，4）为PMI提供超越 网络的人员不断纳入新的知识和工具，通过部署创新的比赛， 众包和婚介服务。