Importance Children with epidermolysis bullosa (EB) comprise a rare population with high
morbidity and mortality. An improved understanding of the clinical trajectory of patients with
EB, including age at time of clinical diagnosis and major clinical events, is needed to refine
best practices and improve quality of life and clinical outcomes for patients with EB.
Objectives To describe demographics, clinical characteristics, milestone diagnostic and
clinical events (such as initial esophageal dilation), and outcomes in patients with EB using …