Observing Corneal Abrasions in Patients with Dystrophic Epidermolysis Bullosa DEB to Understand Their Natural Course

What this Trial Is About

This research aims to understand the natural history of corneal abrasions in patients with Dystrophic Epidermolysis Bullosa DEB, including both recessive and dominant forms. The study is observational and non-interventional, focusing on how often corneal abrasions occur and their symptoms over time in this patient population. It is sponsored by Krystal Biotech, Inc. and seeks to gather detailed information to better characterize these eye issues in DEB. Participants will not receive any treatment as part of this study. Instead, they will be asked to record their symptoms weekly using remote diaries and complete monthly questionnaires to report on the frequency and duration of corneal abrasions. The study will monitor these patterns over a period of up to one year. During the study, participants will regularly provide information about their eye symptoms through digital symptom diaries and questionnaires. The researchers will track the frequency of corneal abrasions as the main measure and also evaluate symptom severity using a specific eye disease index over the course of the study. The total duration of participation may last up to one year, with no interventional procedures involved.

A Natural History Study of Corneal Abrasions in Patients With Dystrophic Epidermolysis Bullosa (DEB)