Improving the health of children and adolescents with autoinflammatory diseases
- Registration Number
- DRKS00032447
- Lead Sponsor
- Deutsches Rheuma-Foschungszentrum Berlin
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- All
- Target Recruitment
- 250
Inclusion Criteria
autoinflammatory disease diagnosed by paediatric rheumatologist
- written informed consent
Exclusion Criteria
- Lack of cognitive maturity to understand the requirements and content of the project
- Diagnoses: systemic JIA, CRMO
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Disease activity (physician global assessment on a numerical rating scale of 0-10, NRS) at each visit
- Secondary Outcome Measures
Name Time Method Disease activity (patient global assessment on a numerical rating scale of 0-10) at each visit<br>Damage (ADDI) at last visit<br>Coping with disease, NRS, at each visit<br>Quality of life (PedsQL 3.0 and 4.0, EQ-5D), at each visit<br>Family burden (FaBel), at each visit<br>Therapy adherence (JAMAR), at each visit<br>Satisfaction with therapy (Likert scale), at each visit