Data Portal Core

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PROJECT SUMMARY Given the complexity of the heart failure with preserved ejection fraction (HFpEF) syndrome, there is a major unmet need to create a comprehensive, resource that can integrate a wide variety of disparate data sources for consumption by the greater scientific community. A relatively “siloed” approach to scientific investigation in HFpEF has not resulted in therapeutic advances thus far; therefore, we must pivot to new approaches, including wider sharing of de-identified data to researchers worldwide to allow for a greater number of novel investigations using the data. For these reasons, a major advance in the clinical investigation of HFpEF will be the development of an effective HeartShare Data Portal that capitalizes on the NHLBI BioData Catalyst resource; aggregates, organizes and curates HeartShare data; and rapidly makes de-identified data available for analysis by qualified investigators around the world. The NHLBI BioData Catalyst resource is ideally suited for the tasks of the HeartShare program because it promotes findability, accessibility, interoperability, and reusability (FAIR-ness), data democratization, robust search/analysis tools, cloud-based computing, and integration with the Trans- Omics for Precision Medicine (TOPMed) program. It will also support NHLBI’s Strategic Vision objective of leveraging emerging opportunities in data science in order to open new frontiers in HFpEF investigation. We propose the following specific aims to accomplish the goals of the HeartShare Data Portal core: (1) To create a comprehensive web-based HeartShare data portal that uses the existing infrastructure of the NHLBI BioData Catalyst and is accessible to the research community, provides data storage/access and analytic tools, and supports online phenotype/omics visualization. (2) To integrate data across an ecosystem of diverse datasets and data resources applicable to HeartShare, including cohort data, clinical trial data, multi-omics data, EHR data (including integration via the Fast Healthcare Interoperability Resources (FHIR) standard with Center for Medicare and Medicaid Services and private insurer data), research testing, biomarkers, and an online repository of de-identified images (e.g., echocardiograms, MRI scans, ECG tracings). (3) To create a comprehensive patient engagement resource (web- and mobile-based platforms) using the Eureka platform to allow for (1) remote consenting and completion of forms, (2) a communication portal for participants (with the ability for patients to view their own individual data and test results, and aggregate HeartShare summary data); and data collection for home devices, sensors, and mobile health applications.