Core Directors: Robin Miller, M.D. and Erin Crowgey, Ph.D.
Robin Miller, MD
Dr. Miller, an Assistant Clinical Professor of Pediatrics, SKMC, Thomas Jefferson University, Philadelphia, PA, received her Doctor of Medicine degree at Temple University School of Medicine, Philadelphia and completed her residency and fellowship at rainbow Babies and Children’s Hospital, Cleveland, OH. Dr. Miller is currently a Director of Sickle Cell Disease Center Program and a staff physician for Pediatric Hematology/Oncology at Nemours Children’s Health, DE. She was a target project lead for the SCD COBRE Phase 1 Program.
Publications
Erin Crowgey, PhD
Dr. Crowgey received her Doctor of Philosophy degree at University of Delaware, Newark, DE, and is currently a Director of Medical Bioinformatics for the Nemours Center of Cancer and Blood Disorders (NCCBD) at Nemours Children’s Health, DE. Her primary expertise is in molecular biology and bioinformatics. She was a Pilot Project lead for the Sickle Cell Disease COBRE Phase 1 Program and will continue to get involved with SCD COBRE Phase 2 as a CRDIC Director.
Publications
https://www.ncbi.nlm.nih.gov/myncbi/erin.crowgey.1/bibliography/public/
Project Summary
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). As a disease of minorities, there is a longstanding history of disparate healthcare utilization, delivery, and availability as well as access to and participation in clinical research.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 clinicalresearch opportunities, enable SCD researchers in the successful conduct of impactful research, and improve patient care for a complex and underserved 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 corewill create a centralized platform that provides all of 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, address barriers to care and foster adherence. 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.