EBRP 2021 Fellowship

The aim of the Epidermolysis Bullosa Clinical Characterization and Outcomes Database (CCOD) is to collaboratively advance knowledge about epidermolysis bullosa (EB) by capturing and cataloging primary clinical data from patients with EB from multiple EB centers in North America. As EB is a rare disease, coordination and collaboration between multiple centers of excellence will expedite our understanding of disease manifestations, course, and complications, with the aim of improving future care, expanding clinical and translational research, and finding an eventual cure for individuals with EB. The objective of this collaborative study is to maintain and utilize a database of comprehensive clinical data from patients with EB, including: 1. Clinical patient characteristics, including molecular and genetic characterization, in order to have well-described patient cohorts that may participate in future therapeutic trials; 2. Longitudinal data regarding the course, complications, and clinical interventions of EB, in order to have a platform for the development and on-going refinement of guidelines for best clinical practice, thereby improving patient outcomes. The study endpoint is comprehensive data collection and analysis of data. Should potential modifiers of disease outcome be identified, then appropriately controlled studies will be designed to address these factors and interventions. If therapeutic advances benefit certain patients, then they may be contacted to inform them of relevant treatment options. Maintenance of this database will continue indefinitely. There is no treatment arm to the study.