Butterfly disorder cotton wool skin disorder crystal skin disorder severe heriditary blister disease
Conditions
Interventions
None listed
Sponsors
Universitair Medisch Centrum Groningen
Eligibility
Age
2 Years to 99 Years
Inclusion criteria
Inclusion criteria: All RDEB patients that are willing and able (above 8 years of age, both genders, foreign UMCG/blister center visitors).
Exclusion criteria
Exclusion criteria: A clinical condition that would render participation undesirable (very ill patients). Very young children that will not (or cannot) keep still during investigations.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Outcome of standard ophthalmic investigations, supplemented with fundus imaging, Pentacam and 3D-OCT investigations. Completion of these clinical investigations, documentation of the outcome in the research file, deriving and storing anonimyzed information out of that file, and interpreting the data. Data used for this study will be encrypted and only involved researchers have access to the data. | — |
Countries
Netherlands
Outcome results
None listed