Data Portal Core

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 唐氏综合症（DS）社区的全球首屈一指的发现平台和数据资源。的INCLUDE 数据门户将提供集成的数据访问、数据可重用性和数据可视化以及云计算， 基础知识和工具，以加速发现病因学和生物学途径的基础上， 该人群中多种合并症的患病率增加。作为该项目的主要外向工具， INCLUDE数据门户将为DS社区的各种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，以及自我倡导者及其家人，以及公众， 大. DCC团队成员在费城儿童医院和圣贾斯汀母亲和儿童大学 医院中心将领导门户开发，利用经验、技术和基础设施 与Kids First数据资源门户网站相关联，同时还将DS数据驱动的上下文从 TrisomExplorer是一个创新的数据门户网站，用于临床数据和人类开发的多组学数据集。 科罗拉多大学的三体项目小组。这一做法将确保迅速和成功地提供一个 为INCLUDE项目提供最先进的数据门户。此外，我们将继续在功能上进行创新， 通过范德比尔特开发的新途径，更直接地将用户提供的数据引入门户 大学医学中心团队领导我们所有的数据门户网站。总的来说，INCLUDE数据门户将高度 可互操作，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将围绕一个迭代战略进行构建，该战略利用了我们以前的 工作和成熟的技术。在INCLUDE DS队列工作组建议的指导下， 并与数据管理核心和行政与外联核心密切合作，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， 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 将他们自己的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 方法与持续的用户反馈，以告知发展路线图。这将确保我们满足 满足社区的需求并利用最新技术。我们衡量成功的最终标准是 这些发现将为DS患者带来更长更好的生活。

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.