Status:
RECRUITING
Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients
Lead Sponsor:
Medical University of Vienna
Conditions:
Orphan Diseases
Rare Disorders
Eligibility:
All Genders
5-20 years
Phase:
NA
Brief Summary
"Rare Diseases" is an umbrella term including more than 8.000 different diseases which individually affect only a small percentage of people. Rare diseases predominantly affect children and adolescent...
Detailed Description
1. Background 1.1. Rare diseases Rare diseases are defined as serious diseases which affect only a very small number of people compared to the general population. The more than 8.000 different rare di...
Eligibility Criteria
Inclusion Criteria:
- Children and adolescents with a confirmed diagnosis of a rare disease with
- Age 5-20 years, corresponding to a developmental age of 5-18 years
- Existing medical care at a participating study center because of the rare disease
- Voluntary participation and informed consent
- Ability to complete the questionnaires
- Ability to actively participate the intervention (psychoeducation)
Exclusion Criteria:
- Moderate or severe cognitive impairment
- Simultaneous admission of the child / adolescent to a setting with high-frequency psychotherapeutic intervention (e.g. admission to psychosomatic medicine, child and adolescent psychiatry)
- No informed consent
- Language barrier of the child / adolescent
- Assumption that compliance is too low to attend all study appointments
Key Trial Info
Start Date :
December 15 2024
Trial Type :
INTERVENTIONAL
Allocation :
ESTIMATED
End Date :
December 1 2027
Estimated Enrollment :
100 Patients enrolled
Trial Details
Trial ID
NCT06729554
Start Date
December 15 2024
End Date
December 1 2027
Last Update
May 13 2025
Active Locations (7)
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1
Medical University of Graz
Graz, Austria, Austria, 8010
2
Medical University of Innsbruck
Innsbruck, Austria, Austria, 6020
3
The Faculty of Medicine JKU Linz
Linz, Austria, Austria, 4020
4
SALK PMU
Salzburg, Austria, Austria, 5020