Status:
UNKNOWN
Children Affected by Rare Disease and Their Families Network
Lead Sponsor:
Silke Wiegand-Grefe, Prof. Dr.
Collaborating Sponsors:
Techniker Krankenkasse
BARMER
Conditions:
Rare Diseases
Eligibility:
All Genders
1-21 years
Phase:
NA
Brief Summary
Families of children with rare diseases (i.e., not more than 5 out of 10.000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and his/h...
Detailed Description
The central objective of the study at hand is to close the supply gap for families with children and adolescents affected by rare diseases. Two innovative forms of care (CARE-FAM and WEP-CARE) will be...
Eligibility Criteria
Inclusion
- Family with at least one child between 0 and 21 years with a rare disease or a suspected rare disease.
- Consent to participate in the study.
- Sufficient knowledge of the German language of parents and children.
- Insured at the participating insurance companies.
Exclusion
- 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.
Key Trial Info
Start Date :
January 1 2019
Trial Type :
INTERVENTIONAL
Allocation :
ACTUAL
End Date :
December 31 2022
Estimated Enrollment :
687 Patients enrolled
Trial Details
Trial ID
NCT04339465
Start Date
January 1 2019
End Date
December 31 2022
Last Update
September 16 2022
Active Locations (17)
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1
Medical Center Klinikum Augsburg, Kinderklinik Augsburg, l. Klinik für Kinder- und Jugendliche
Augsburg, Germany
2
Medical Center DRK Kliniken Berlin Westend, Klinik für Kinder- und Jugendmedizin
Berlin, Germany
3
Medical Center Evangelisches Klinikum Bethel, Klinik für Kinder- und Jugendmedizin
Bielefeld, Germany
4
University Medical Center Ruhr-Universität Bochum, Klinik für Kinder- und Jugendmedizin
Bochum, Germany