nderstanding growth in patients with epidermolysis bullosa.

• Conditions: Q81.8; Epidermolysis bullosa dystrophica; Other epidermolysis bullosa; Q81.2

• Registration Number: DRKS00013002
• Lead Sponsor: Epidermolysis bullosa-Zentrum Freiburg, Klinik für Dermatologie und Venerologie, Universitätsklinikum Freiburg - Eigenforschungsprojekt

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2018-02-01
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Complete
• Sex: All
• Target Recruitment: 871

Inclusion Criteria

Molecular diagnosis of epidermolysis bullosa
- At least one clinical presentation to the Epidermolysis bullosa center Freiburg

Data on height and weight measurements are gathered from patient files of the years 2002 to now for retrospective analysis. Prospective data collection takes place as of ethic consent in 04/2017 and will continue until the summer of 2018.

Exclusion Criteria

- No molecular diagnosis of epidermolysis bullosa
- No clinical presentation to the Epidermolysis bullosa center Freiburg

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Retrospective analysis of data from patient files:<br>-Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales<br>-Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure<br>The primary outcome is the existence of failure to thrive (i.e. weight and height below 3. percentile of WHO-growth curves).

Secondary Outcome Measures

Name	Time	Method
Retrospective analysis of data from patient files:<br>-Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales<br>-Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure<br><br>Secondary outcomes are the existence of <br>-Underweight (i.e. weight below 3. percentile of WHO-growth curves)<br>-Short stature (i.e. height below 3. percentile of WHO-growth curves)