Utilizing FHIR to expand the availability of interoperable clinical and phenotypic data to the pediatric research community

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Project Summary The Gabriella Miller Kids First Data Resource Center (KFDRC) currently provides genomic data on over 25,000 participants to the research community with over 20,000 in processing slated to be released. Paired with this genomic data is clinical and phenotypic data that is provided by a wide variety of studies across structural birth defects and childhood cancer. To accommodate the breadth of clinical and phenotypic data and the mandate for interoperability, the KFDRC has set up FHIR services as the primary API for this data. The Kids First portal is able to use the standardized representation in FHIR to make the data searchable and available to the broader community. FHIR additionally enables other applications or developers to more easily integrate Kids First data. As part of the onboarding to FHIR, KFDRC leverages Dewrangle, an open access application, to help manage and facilitate data release via FHIR. With this new setup, we will review the existing Kids First studies and expand the clinical and phenotypic variables available to the Kids First DRC community via FHIR. To make this process more sustainable and scalable we will implement new Dewrangle capabilities to streamline data release and management and improve reproducibility for the expanded Kids First FHIR data elements.