Rare Disease Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
- Children and teenagers between the ages of 5 and 20 years old (with a developmental age of 5 to 18 years) who have been diagnosed with a rare disease
- You are already receiving medical care for your rare disease at one of the hospitals or clinics taking part in this study
- You are willing to take part and have given your agreement (and a parent or guardian has also given their consent where needed)
- You are able to fill in the questionnaires used in the study
- You are able to actively take part in the educational sessions (called psychoeducation) that are part of the study
Who may not be able to join:
- Children or teenagers who have moderate or severe difficulties with thinking, learning, or understanding (cognitive impairment)
- Children or teenagers who are currently receiving intensive psychological or psychiatric treatment in a specialist setting, such as a psychosomatic medicine unit or a child and adolescent psychiatry ward
- Anyone who has not given their agreement to take part in the study
- Children or teenagers who have a language barrier that would prevent them from taking part
- Children or teenagers where the study team has concerns that they may not be able to attend all of the required study appointments
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Phone: +4314040032320
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Rare Disease Specific Self-Rating Scale
Can't join this trial?
Data last synced from ClinicalTrials.gov: 22 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.