Data Portal Core

数据门户核心

• 批准号: 10697350
• 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/10697350
• 关键词: Academic Medical Centers; Acceleration; 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; Education; Ensure; Environment; Etiology; Family; Feedback; Genomics; Goals; Human; Individual; Infrastructure; Internet; Intuition; Libraries; Life Style; Link; Methodology; Mission; Mothers; Multiomic Data; Online Systems; Participant; Pathway interactions; Pediatric Hospitals; Performance; Philadelphia; Population; Prevalence; Proteome; Recommendation; Research; Research Methodology; Research Personnel; Resources; Series; Software Engineering; Specimen; Structure; Technology; Training; United States National Institutes of Health; Universities; University Hospitals; Variant; Visualization; Visualization software; Work; analytical tool; biobank; cloud based; cohort; comorbidity; computational platform; data access; data integration; data management; data portal; data resource; data visualization; empowerment; experience; experimental analysis; genomic data; innovation; interoperability; member; metabolome; 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。 INCLUDE 数据协调中心 (DCC) 的数据门户核心 (DPC) 的目标是创建 世界首屈一指的唐氏综合症 (DS) 社区发现平台和数据资源。 数据门户将与云一起提供集成的数据访问、数据可发现性和数据可视化 基于工作区和工具，以加速对潜在病因学和生物学途径的发现 作为该项目的主要外向工具，该人群中各种合并症的患病率有所增加。 INCLUDE 数据门户将为 DS 社区中的不同利益相关者群体提供服务，包括生物医学领域 研究人员、民俗学家、数据科学家、教育工作者以及自我倡导者及其家人和公众 大的。 费城儿童医院和圣贾斯汀母子大学的 DCC 团队成员 医院中心将利用经验、技术和基础设施来领导门户网站的开发 与 Kids First 数据资源门户相关联，同时还纳入了来自 TrisomExplorer，人类开发的临床数据和多组学数据集的创新数据门户 科罗拉多大学的三体项目团队这种方法将确保快速、成功地交付。 此外，我们将继续在功能上进行创新，以实现 INCLUDE 项目的最先进的数据门户。 通过范德比尔特大学开发的新途径，更立即地将用户提供的数据引入门户 领导 All of Us 数据门户的大学医学中心团队总体而言，INCLUDE 数据门户将受到高度评价。 具有互操作性，并准备代表 DS 研究利用基于云的 NIH 资源生态系统。 为了实现这些目标，DPC 将围绕迭代策略构建，该策略利用我们之前的策略 在 INCLUDE 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 快速启动 INCLUDE 数据门户，使社区可以查找和访问数据 (AIM 1)， 通过支持 DS 研究 (AIM 2) 的集成和功能扩展门户，提供与 现有和新兴的平台和应用程序（AIM 3），并开发新的方法，使研究人员能够 将自己的 DS 相关数据带入门户以加速发现 (AIM 4)。 在 INCLUDE 数据门户的整个开发过程中，我们将结合最佳实践软件工程 通过持续的用户反馈来告知开发路线图的方法，这将确保我们满足目标。 社区的需求并利用最新技术，我们衡量成功的最终标准是实现。 这些发现将为 DS 患者带来更长、更好的生活。