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

Launched by MEDICAL UNIVERSITY OF VIENNA · Dec 8, 2024

Keywords

ClinConnect Summary

This clinical trial is studying a new program called "Education & Care in RARE," which is designed to help children and teens with rare diseases. Rare diseases are conditions that affect only a small number of people, and they often cause significant challenges for patients and their families. The goal of this study is to see if this psychoeducation program can improve the participants' understanding of their rare disease and their overall mental health.

To take part in the study, children and adolescents aged 5 to 20 who have a confirmed diagnosis of a rare disease can join, as long as they are receiving care at a study center and can complete questionnaires. Participants will be randomly assigned to either receive the program right away or to wait for a few weeks before starting. Both groups will fill out the same questionnaires before and after the program, allowing researchers to compare the results. This study is currently recruiting participants, and it's an opportunity for families to engage in a supportive learning experience that may benefit their child’s health and well-being.

Gender

ALL

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