- 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.
