Actively Recruiting
Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients
Led by Medical University of Vienna · Updated on 2025-05-13
100
Participants Needed
7
Research Sites
154 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
"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 adolescents and are associated with high medical and psychosocial burden of disease. The investigators invented Education \& Care in RARE - a short-term, structured, resource-oriented and child-friendly psychoeducation program for children and adolescents with rare diseases. This study is a prospective, multicenter, randomized and controlled study with a waiting list. Aim of the study is to investigate the efficacy of Education \& Care in RARE on knowledge about rare diseases and on mental health well-being in pediatric rare disease patients, compared to a control group. In this study participants are randomized in an intervention group and a waiting list control group. Both study groups thus receive the psychoeducation with Education \& Care in RARE and complete the identical questionnaires. Compared to the Intervention group, the waiting list control group receives the intervention with a time delay (8-12 weeks later) and has one additional appointment for questionnaire evaluation before start of the psychoeducation.
CONDITIONS
Official Title
Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children and adolescents aged 5 to 20 years with developmental age of 5 to 18 years
- Confirmed diagnosis of a rare disease
- Receiving medical care at a participating study center for the rare disease
- Voluntary participation with informed consent
- Ability to complete questionnaires
- Ability to actively participate in the psychoeducation intervention
You will not qualify if you...
- Moderate or severe cognitive impairment
- Currently admitted to a setting with high-frequency psychotherapeutic treatment (e.g., psychosomatic medicine or child and adolescent psychiatry)
- No informed consent
- Language barrier preventing participation
- Expected low compliance making attendance to all study appointments unlikely
AI-Screening
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Trial Site Locations
Total: 7 locations
1
Medical University of Graz
Graz, Austria, Austria, 8010
Actively Recruiting
2
Medical University of Innsbruck
Innsbruck, Austria, Austria, 6020
Actively Recruiting
3
The Faculty of Medicine JKU Linz
Linz, Austria, Austria, 4020
Actively Recruiting
4
SALK PMU
Salzburg, Austria, Austria, 5020
Actively Recruiting
5
WIGEV Klinikum Favoriten
Vienna, Austria, Austria, 1100
Actively Recruiting
6
Ordensklinikum Linz
Linz, Austria, 4010
Actively Recruiting
7
Medical University of Vienna
Vienna, Austria, 1090
Actively Recruiting
Research Team
J
Julia Vodopiutz, MD apProf
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
TREATMENT
Number of Arms
2
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