Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients
Recruiting
N/A
Interventional Study
Orphan Diseases
Rare Disorders
Pediatric Diseases
Inborn Errors of Metabolism Disorders
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
At a Glance
- Age
- 5 – 20
- Sex
- Any
- Study type
- Interventional
- Purpose
- Treatment
- Participants needed
- 100 (estimated)
- Sponsor
- Medical University of Vienna · Other
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About This Trial
"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 psycho…
Trial Locations
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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
* …
Contacts