Social Participation of Patients with Epidermolysis Bullosa
- Conditions
- Q81Epidermolysis bullosa
- Registration Number
- DRKS00033763
- Lead Sponsor
- niversitätsklinikum Freiburg, Klinik für Dermatologie und Venerologie
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- All
- Target Recruitment
- 102
Inclusion Criteria
Affected by Epidermolysis bullosa and sufficient German speaking/reading skills
Exclusion Criteria
Not affected by Epidermolysis bullosa, not sufficient German speaking/reading skills
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Social participation measured with (5/24 - 11/24):<br>- Inventar zur Messung der Einschränkung der Teilhabe (IMET)<br>- Kurz-Skala zur Erfassung wahrgenommener sozialer Teilhabe (KsT-5)<br><br>The survey is expected to start 7/24 and will run for six months.
- Secondary Outcome Measures
Name Time Method - Membership in a patient organization and/or networking with other patients (self generated items)<br>- Socioeconomic status (self generated items)