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Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients

RecruitingNAAges 5 Years - 20 YearsAllMedical University of Vienna
NCT06729554 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

"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 recei

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📋 Eligibility rules (as published)
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
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What it tests

  • Education & Care in RARE
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Where

7 sites
Medical University of Graz
Graz, Austria
Medical University of Innsbruck
Innsbruck, Austria
The Faculty of Medicine JKU Linz
Linz, Austria
SALK PMU
Salzburg, Austria
WIGEV Klinikum Favoriten
Vienna, Austria
Ordensklinikum Linz
Linz, Austria
Medical University of Vienna
Vienna, Austria
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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