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

NARecruitingINTERVENTIONAL
Enrollment

100

Participants

Timeline

Start Date

December 15, 2024

Primary Completion Date

December 1, 2026

Study Completion Date

December 1, 2027

Conditions
Orphan DiseasesRare DisordersPediatric DiseasesInborn Errors of Metabolism Disorders
Interventions
OTHER

Education & Care in RARE

Education \& Care in RARE (https://www.youtube.com/watch?v=R3fr-q-6JIw) is a short-term, structured, resource-oriented and child-friendly psychoeducation program for children and adolescents with rare diseases. It promotes knowledge and competence on rare diseases in children in order to reduce the psychosocial rare disease burden and to improve individual self-competence in managing the rare disease and to improve their quality of life. Education \& Care in RARE can be used for all pediatric rare diseases. This has the great advantage that users only need to be trained in the use of one program.

Trial Locations (7)

1090

RECRUITING

Medical University of Vienna, Vienna

1100

RECRUITING

WIGEV Klinikum Favoriten, Vienna

4010

RECRUITING

Ordensklinikum Linz, Linz

4020

RECRUITING

The Faculty of Medicine JKU Linz, Linz

5020

RECRUITING

SALK PMU, Salzburg

6020

RECRUITING

Medical University of Innsbruck, Innsbruck

8010

RECRUITING

Medical University of Graz, Graz

All Listed Sponsors
lead

Medical University of Vienna

OTHER