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A cartoon-style program may help children with rare diseases understand their condition and boost mental health

NCT ID NCT06729554

Symptom relief Sponsor: Medical University of Vienna Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 28, 2026 · Last updated Jul 29, 2026 · Updated 1 time

Summary

This trial tests a short, child-friendly psychoeducation program called Education & Care in RARE for children and teens aged 5–20 with any rare disease. The program uses simple, resource-oriented materials to teach kids about their condition and build coping skills. Researchers will compare those who receive the program right away with a waiting-list group to see if it improves disease knowledge and emotional well-being.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
a short-term, structured, child-friendly psychoeducation program called Education & Care in RARE
What this could lead to
If effective, this program could offer a simple, scalable way to help children with rare diseases better understand their condition and cope emotionally.
What could go wrong
This is a relatively small trial testing a new educational tool, so results may not apply broadly. The program's benefits depend on children's engagement and may not translate to lasting improvements.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

About 100 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2024

Expected to finish

Dec 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

5 to 20 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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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Conditions

The condition(s) this trial relates to.

inborn errors of metabolism Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Inborn errors of metabolism disorders Orphan diseases Pediatric diseases Rare disorders

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    7 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Medical University of Graz

    RECRUITING

    Graz, Austria, 8010, Austria

  • Medical University of Innsbruck

    RECRUITING

    Innsbruck, Austria, 6020, Austria

  • Medical University of Vienna

    RECRUITING

    Vienna, 1090, Austria

  • Ordensklinikum Linz

    RECRUITING

    Linz, 4010, Austria

  • SALK PMU

    RECRUITING

    Salzburg, Austria, 5020, Austria

  • The Faculty of Medicine JKU Linz

    RECRUITING

    Linz, Austria, 4020, Austria

  • WIGEV Klinikum Favoriten

    RECRUITING

    Vienna, Austria, 1100, Austria

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