HeartShare DeCODE-HF: Data translation center to Combine Omics, Deep phenotyping, and Electronic health records for Heart Failure subtypes and treatment targets

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PROJECT SUMMARY The Overarching Aim of the Northwestern HeartShare DeCODE-HF: Data translation center to Combine Omics, Deep phenotyping, and Electronic health records for Heart Failure subtypes and treatment targets is to provide overall management and oversight for HeartShare, including coordination and communication across all subsections and cores of the program, and with the 4 HeartShare Clinical Centers (CCs). The Data Translation Center (DTC) will need to ensure timely completion of the retrospective and prospective components of HeartShare. In our application, we demonstrate the ability and prior experience of our multi-PI team and core leaders in the conduct and leadership of large-scale, multi-center studies, particularly in the realms of heart failure with preserved ejection fraction (HFpEF), electronic health record (EHR)-based investigation, deep phenotyping, machine learning, and biorepositories. For both the retrospective and prospective HeartShare components, the Northwestern DTC will leverage its considerable experience in: (1) cohorts and trials that have data on adjudicated HF patients, and (2) its leadership and track record as the top enroller in HFpEF trials/studies to ensure optimal recruitment by the HeartShare CCs. We will also leverage our expertise in HFpEF, data coordination/management, BioData Catalyst, EHR-based research, biostatistics, machine learning, multi-omics, human-computer interaction, and mobile health data monitoring to (1) successfully execute the HeartShare program and (2) meet the HeartShare DTC goals of providing a rich resource to the research community to advance the science of next-generation phenomics to identify HFpEF subtypes and therapeutic targets. Our HeartShare DTC will carry out each of its 4 primary responsibilities. (1) The Administrative and Outreach Core will oversee HeartShare program operations, research skills development, and capitation to CCs for deep phenotyping costs; support a call center to follow patient outcomes; and promote rapid and broad data-sharing of clinical and molecular data. (2) The Data Portal Core will serve as the primary access point (via a web-based interface) and coordinating center for all HeartShare data; and to develop an interactive patient-facing web-based interface for remote consent, completion of forms, and collection of mobile health data using BioData Catalyst tools. (3) The Data Management Core will oversee ensure data quality, integration and harmonization of various data types; perform advanced analytics; coordinate biospecimen and imaging biorepositories; and integrate with TOPMed for omics analyses. (4) The Cohort Core will aggregate data on HF patients from completed epidemiology cohorts and HF trials and will combine data with further bioprofiling of existing samples to allow discovery/validation of novel targets.