NCT07167732Recruiting
CTNNB1 Neurodevelopmental Syndrome - Natural History Study
Dragonfly Study: An International, Prospective, Longitudinal, Observational Natural History Study of Children and Adults Living With CTNNB1 Neurodevelopmental Syndrome
Source: ClinicalTrials.gov · Last updated 22 Sept 2025 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
The aim of the Dragonfly study is to characterise and monitor the neurodevelopment of children and adults diagnosed with CTNNB1 syndrome through an international collaborative effort. Gaining comprehensive understanding of the mental, physical and social development of people with CTNNB1 neurodevelopmental syndrome and how their symptoms and abilities change over time will help improve and standardize care for these patients, as well as facilitate future research and clinical trials design.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 250 (estimated)
- First submitted
- 3 Sept 2025
- Start date
- 14 Jun 2024
- Primary completion date
- Jun 2029
- Lead sponsor
- University Medical Centre Ljubljana
- Diseases
- Autism
- NCT number
- NCT07167732
What you commit to
- Study type: Observational
- Planned participants: 250
- From 14 Jun 2024 to the primary completion date, Jun 2029
- 2 sites in 2 countries
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Child/adult with CTNNB1 syndrome participating in a clinical trial of a potential treatment for the syndrome.
Who the study is looking for
- Clinically and genetically confirmed diagnosis of CTNNB1 syndrome.
- Age 0-99 years.
- Written informed consent/online consent to participate in study from a primary carer (parent or legal guardian).
Sex: All · Does not accept healthy volunteers
Sites (2)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Sydney Children's Hospital Coordinator of this site? Confirm its status | Sydney | Australia | Not yet recruiting |
| University Medical Centre Ljubljana Coordinator of this site? Confirm its status | Ljubljana | Slovenia | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.