Principal Investigator:
Anna Bruckner, MD – University of Colorado
Overview:
This is an ongoing registry study spanning 10 sites. Data is being collected from children with epidermolysis bullosa (EB) to better understand their demographics, clinical characteristics, diagnoses, clinical events, and outcomes. This project is being run in close partnership with, and with financial support from, the EB Research Partnership and EB Medical Research Foundation.
Status:
Data collection is ongoing. The first manuscript from this project was published by Feinstein et al. in JAMA Dermatology in late 2018. See our publication page for more information.