Clinical Research and Data Informatics Core

The Clinical Research and Data Informatics Core (CRDIC) will continue to build on the strong clinical and informatics research infrastructure established by the COBRE-supported The Delaware Comprehensive Sickle Cell Research Center (DE SCD COBRE). There is a tremendous need to improve the clinical and research infrastructure for patients with sickle cell disease (SCD). The mission of this project is to establish the DE SCD COBRE as a leader in clinical and translational science providing children and young adults with SCD the opportunity to participate in cutting-edge research, and to ensure delivery of the highest quality care. This will be accomplished by creating a strong clinical research support infrastructure integrated with advanced principles of data science which will open new clinical research opportunities, enable SCD researchers in the successful conduct of impactful research, and improve patient care for a complex patient population affected by SCD. As an integrated clinical and informatics core, the CRDIC will have the capability to support translational clinical projects and to assist junior researchers in overcoming complex obstacles associated with this type of work. This core will create a centralized platform that provides all the resources required to support SCD research and clinical quality improvement efforts, including project management, regulatory support, guidance and mentorship of junior investigators and expertise in data analytics and data science techniques. A quality/outcomes team, paired with community-level support, will ensure delivery of cutting-edge, high-quality, evidence-based, safe care to patients throughout Nemours, and improve adherence to recommended diagnostics and treatments. Use of a SCD-specific common data model and a scalable electronic health system-informed analytic knowledgebase will support clinical care and facilitate cohort discovery and data reporting for research and allow for the sharing of data across institutional boundaries. This platform will facilitate the long-term sustainability of the DE SCD COBRE.