Data and Research Support Center

数据与研究支持中心

• 批准号: 10330446
• 负责人: DAVID GLAZER
• 金额: $ 1031.15万
• 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/10330446
• 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; Human; Human Resources; Individual; Infrastructure; Knowledge; Learning; Link; Longitudinal cohort; Methods; Mind; Mission; Modeling; Monitor; Nature; Onset of illness; Outcome; Participant; Pharmacology; Population; Precision Medicine Initiative; Preservation Technique; Privacy; Process; Production; Research; Research Personnel; Research Support; Secure; Security; Services; Site; Source; Structure; Sum; System; Traction; Trust; Vision; cohort; crowdsourcing; data access; data infrastructure; data standards; design; experience; improved; innovation; knowledge of results; patient engagement; precision medicine; prevent; privacy preservation; 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.

承诺摘要 精确医学计划（PMI）的总体目标是改变我们对这些因素的理解 为健康和疾病做出贡献，并最终利用这种理解到我们如何预防的信息 和治疗疾病。这个大胆的目标将在创建100万的纵向队列中进行操作 个人。 PMI协调中心（CC）（称为围绕参与，数据，数据， 基因组学，环境或“承诺”）实现了这一愿景，可作为PMI网络的枢纽 领导参与参与策略的优化，强大的数据基础架构，促进的支持 研究人员，网络利益相关者之间的协调和沟通， 负责入学人群的直接志愿者。誓言的目标由四个提议说明 具体目的：1）支持网络及其指导委员会以建立，实施，监控和达到其 程序化目标。充当PMI的可见国家住所，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“一站式商店”店面 访问高素质的研究； 2）在不牺牲的情况下注册一组高度参与的直接志愿者 数量的包容性； 3）协调医疗保健提供者组织的技术实践 数据标准，元素和模型，同时在不合格的情况下从网络站点培养创新 有利。应用严格的隐私和安全保障；最后，4）为PMI提供支持 网络的人员通过部署创新竞赛，不断结合新知识和工具， 人群采购和对接服务。