Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe
Recruiting
- Conditions
- Q81Epidermolysis bullosa
- Registration Number
- DRKS00031426
- Lead Sponsor
- European Joint Programme Rare Diseases
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- All
- Target Recruitment
- 300
Inclusion Criteria
Affected by Epidermolysis bullosa and main care giver
Exclusion Criteria
not affected by Epidermolysis bullosa or not main caregiver
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method An online questionnaire study will be conducted. The start of the distribution of the questionnaire is planned for 9/23 and participants can complete the questionnaire until 5/24.<br><br>Different QoL tests are used depending on age and relation to EB (affected/caregiver). For each age and person group, one generic test (EQ-5D-5L, EQ-5D-Y self-assessment and EQ-5D-Y external assessment) and one disease-specific QoL test are used (QoLEB, CDLQI cartoon version, CDLQI text version and EB-BoD).<br><br>Main caregiver: EQ-5D-5L & EB-BoD<br>- Affected person > 16 years: EQ-5D-5L<br>- Affected person > 11 years: QoLEB<br>- Affected persons 8-10 years: CDLQI<br>- Affected 8-15 years: EQ-5D-Y (if necessary with the help of parents or caregiver)<br>- Affected 4-7 years: EQ-5D-Y (external assessment by caregiver) & CDLQI (cartoon version)
- Secondary Outcome Measures
Name Time Method An online questionnaire study will be conducted. The start of the distribution of the questionnaire is planned for 9/23 and participants can complete the questionnaire until 5/24.<br>Besides HRQoL the resource use and the cost of illness will be measured (items were generated by the project consortium):<br>- Use of healthcare and non-healthcare resources<br>- Employment and productivity / Education<br>- Other out-of-pocket expanses<br>- Carer´s employment and productivity