Children affected by rare diseases, their siblings and their families (CARE-FAM-NET)
Not Applicable
- Conditions
- rare diseases
- Registration Number
- DRKS00015859
- Lead Sponsor
- niversitätsklinikum Hamburg-Eppendorf Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Complete
- Sex
- All
- Target Recruitment
- 687
Inclusion Criteria
1. Families with at least one child between the age of 0 and 21 years with a rare disease or with a suspected rare disease.
2. Consent to participate in the study.
3. Sufficient knowledge of the German language of parents and children.
4. Insured at the participating insurance companies.
Exclusion Criteria
Severe psychiatric disorders and impairments with acute symptoms such as suicidal tendencies, severe depression, addictions, acute psychotic symptoms etc., which will not be sufficiently supplied by this new low-frequency intervention. Children and parents with acute treatment demand in the control group will be placed at psychotherapists. Nevertheless, they stay in the control group
Study & Design
- Study Type
- interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Proportion of parents without mental abnormities among the parents with initial mental abnormities, assessed by the external, independent Structured clinical interview for DSM-IV” (SCID; Wittchen, Zaudig & Fydrich,1997) 18 months after randomization.
- Secondary Outcome Measures
Name Time Method