Epidermolysis bullosa simplex (EBS) is the most common subtype of epidermolysis bullosa (EB), a group of inherited skin conditions characterized by blistering and skin fragility. Despite its prevalence, there is no U.S. Food and Drug Administration-approved treatment for EBS, and clinicians have lacked a standardized method to measure disease severity, until now.

“We don’t have therapies for these patients, so studies like this are about finding ways to improve quality of life and find treatments in the future,” said Amy Paller, MS, MD, ’81, ’83 GME, the chair and Walter J. Hamlin Professor of Dermatology, who was a co-author of the study. “Previously, drug companies conducting clinical trials had no specific tool to measure this.”

In the current study, investigators from medical sites across the country analyzed a repository of 130 clinical photographs from 80 genetically confirmed EBS patients, capturing a range of disease severities across five anatomical regions. Nine board-certified dermatologists scored the images using a 5-point scale, assessing features such as blistering, erosions and keratoderma.