Data Portal Core

数据门户核心

• 批准号: 10264915
• 负责人: Adam Cain Resnick
• 金额: $ 174.12万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-26 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10264915
• 关键词: Academic Medical Centers; Advocacy; Advocate; Area; Automobile Driving; Big Data; Biological; Biological Specimen Banks; Biomedical Research; Child; Clinical; Clinical Data; Clinical Informatics; Collaborations; Colorado; Communities; Computer software; Data; Data Analyses; Data Coordinating Center; Data Element; Data Scientist; Data Set; Databases; Development; Down Syndrome; Ecosystem; Ensure; Environment; Etiology; Family; Feedback; Genomics; Goals; Human; Individual; Infrastructure; Internet; Intuition; Lead; Libraries; Life Style; Link; Methodology; Methods; Mission; Mothers; Online Systems; Participant; Pathway interactions; Pediatric Hospitals; Performance; Philadelphia; Population; Prevalence; Proteome; Recommendation; Research; Research Personnel; Resources; Series; Software Engineering; Specimen; Structure; Technology; Training and Education; United States National Institutes of Health; Universities; University Hospitals; Variant; Visualization; Visualization software; Work; analytical tool; base; biobank; cloud based; cohort; comorbidity; computational platform; data access; data management; data portal; data resource; data visualization; empowered; experience; experimental analysis; genomic data; innovation; interoperability; member; metabolome; multiple omics; new technology; outreach; portability; repository; search engine; success; tool; transcriptome; web interface; working group

PROJECT SUMMARY - Data Portal Core. The objective of the Data Portal Core (DPC) of the INCLUDE Data Coordinating Center (DCC) is to create the world’s premiere discovery platform and data resource for the Down syndrome (DS) community. The INCLUDE Data Portal will provide integrated data access, data discoverability, and data visualization alongside cloud- based workspaces and tools to accelerate discoveries on the etiology and biological pathways underlying the increased prevalence of diverse comorbidities in this population. As the project’s chief outward-facing tool, the INCLUDE Data Portal will serve a diverse group of stakeholders in the DS community, including biomedical researchers, clinicians, data scientists, educators, as well as self-advocates and their families, and the public at large. DCC team members at the Children’s Hospital of Philadelphia and Sainte-Justine Mother and Child University Hospital Center will lead the portal development, leveraging the experiences, technologies, and infrastructure associated with the Kids First Data Resource Portal, while also incorporating DS data-driven contexts from the TrisomExplorer, an innovative data portal for clinical data and multi-omics datasets developed by the Human Trisome Project team at the University of Colorado. This approach will ensure rapid and successful delivery of a state-of-the-art Data Portal for the INCLUDE Project. Moreover, we will continue to innovate on functionality to more immediately bring in user-provided data into the portal via new pathways developed by the Vanderbilt University Medical Center team leading the All of Us data portal. Overall, the INCLUDE Data Portal will be highly interoperable and poised to leverage the ecosystem of cloud-based NIH resources on behalf of DS research. In order to reach these goals, the DPC will be structured around an iterative strategy that leverages our previous work and proven technologies. Guided by the recommendations of the INCLUDE DS Cohort Working Groups, and in close collaboration with the Data Management Core and the Administrative and Outreach Core, we will rapidly launch the INCLUDE Data Portal to make the data findable and accessible to the community (AIM 1), extend the portal with integrations and features supporting DS research (AIM 2), provide interoperability with existing and emerging platforms and applications (AIM 3), and develop new ways of empowering researchers to bring their own DS-related data into the portal for accelerated discovery (AIM 4). Throughout the development of the INCLUDE Data Portal, we will couple best practice software engineering methodology with continuous user feedback to inform the development roadmap. This will ensure we meet the needs of the community and leverage the latest technologies. Our ultimate metric of success is to enable discoveries that will lead to longer and better lives for those with DS.

项目摘要 - 数据门户核心。 包含数据协调中心（DCC）的数据门户核心（DPC）的目的是创建 唐氏综合症（DS）社区的世界首屈一指的发现平台和数据资源。包括 数据门户将提供集成的数据访问，数据发现性和数据可视化以及云 - 基于基于对病因和生物学途径的发现的工作空间和工具 该人群中潜水员合并症的患病率增加。作为该项目的主要向外工具， 包括数据门户将为DS社区中的一群利益相关者提供服务，包括生物医学 研究人员，临床医生，数据科学家，教育工作者以及自我倡导及其家人以及公众 大的。 费城儿童医院的DCC团队成员和Sainte-Justine母亲和儿童大学 医院中心将领导门户开发，利用经验，技术和基础设施 与孩子关联的第一个数据资源门户网站，同时还从 TrisomeXplorer，一个创新的数据门户，用于人类开发的临床数据和多摩变数据集 科罗拉多大学的Trisome项目团队。这种方法将确保快速成功地交付 包括项目的最新数据门户。此外，我们将继续创新功能 更立即通过Vanderbilt开发的新途径将用户提供的数据引入门户网站 大学医学中心团队领导着我们所有的数据门户。总体而言，包含数据门户将高度 可互操作和中毒，以代表DS研究来利用基于云的NIH资源的生态系统。 为了实现这些目标，DPC将围绕一种迭代策略来构建，该策略利用我们以前的 工作和验证的技术。在包括DS队列工作组的建议的指导下， 并与数据管理核心以及行政和外展核心密切合作，我们将 迅速启动包含数据门户，以使社区可访问和可访问数据（AIM 1）， 通过支持DS研究（AIM 2）的集成和功能扩展门户网站，并提供互操作性 现有和新兴平台和应用程序（AIM 3），并开发了赋予研究人员权力的新方法 将自己与DS相关的数据带入门户网站以进行加速发现（AIM 4）。 在包含数据门户的整个开发过程中，我们将融合最佳实践软件工程 与连续用户反馈的方法，以告知开发路线图。这将确保我们遇到 社区的需求并利用最新技术。我们成功的最终指标是启用 为患有DS的人带来更长更好的生活的发现。