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

项目摘要 加布里埃拉·米勒儿童第一数据资源中心(KFDRC)目前提供超过25,000份基因组数据 研究社区的参与者中有超过2万人正在处理中，预计将被释放。再配上这个 基因组数据是由各种结构出生研究提供的临床和表型数据 缺陷和儿童癌症。以适应广泛的临床和表型数据以及 为了实现互操作性，KFDRC已将FHIR服务设置为该数据的主要API。孩子们的第一个门户是 能够使用FHIR中的标准化表示法，使数据可供更广泛的人搜索和使用 社区。FHIR还允许其他应用程序或开发人员更轻松地集成Kids First数据。 作为FHIR自注册的一部分，KFDRC利用开放访问应用程序Dewrangle来帮助管理 并通过FHIR促进数据发布。在这个新的设置中，我们将回顾现有的儿童优先研究，并扩展 临床和表型变量可通过FHIR提供给儿童首位DRC社区。要使这一过程 我们将实施新的Dewrangle功能，以简化数据发布和 管理并提高扩展的Kids First Fhir数据元素的再现性。

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.