Clinical Data and Informatics Core

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PROJECT SUMMARY/ABSTRACT – Clinical Data and Informatics Core The Clinical Data and Informatics Core (CDI) Core will provide researchers with access to a full range of services to facilitate successful use of clinical data for basic, clinical and translational research studies in rheumatic diseases. The Core will streamline clinical research infrastructure, including study design, research ethics consultation, patient recruitment, clinical informatics and disease expertise, to advance precision medicine in rheumatic disease. We propose the following Aims for the CDI Core: 1) To facilitate use of unique clinical study databases and biospecimens, 2) To provide individualized consultative services to assist in the design, implementation and analyses of clinical and translational research studies of rheumatic disease, 3) To provide clinical informatics services and innovations that accelerate the science and operations of clinical and translational research, and 4) To contribute clinical data assets in the CDI Core into the integrated UCSF Data Library that includes the Genomic Technology and Integrated Bioinformatics Cores. Advancing precision medicine in rheumatic diseases will require a patient-oriented approach that optimizes coordination of these highly specialized resources across projects. Key strengths of the Core include internationally renowned clinical experts in rheumatology, national leaders in clinical research and clinical informatics, and expertise in human subjects research ethics. Core services will continue to address some of the challenges facing the research community studying rheumatic diseases. These include the need for well-phenotyped patients with high-quality clinical data with linked biospecimens for rheumatic conditions such as systemic lupus erythematosus, vasculitis, spondyloarthritis and others; the need to more efficiently identify and recruit patients for clinical studies using innovative tools linked to electronic health records (EHRs), particularly those with uncommon diseases or clinical phenotypes; and the current lack of coordination of research infrastructure across ongoing studies, leading to inefficiencies in patient recruitment, data collection, and data management. Innovations of the CDI Core include leveraging robust existing clinical informatics infrastructure to bridge the divide between the vast amount of accumulating clinical data and individual investigators who are interested in specific clinical rheumatic diseases; developing and disseminating tools for the more efficient and valid use of EHR data for research; and development of educational modules to accelerate knowledge acquisition among the research community. The overall goal of these activities is to provide critical and cutting-edge resources that create economies of scale for researchers at UCSF and nationally conducting clinical research in the rheumatic diseases.