Actively Recruiting
CTNNB1 Neurodevelopmental Syndrome - Natural History Study
Led by University Medical Centre Ljubljana · Updated on 2025-09-22
250
Participants Needed
2
Research Sites
289 weeks
Total Duration
On this page
Sponsors
U
University Medical Centre Ljubljana
Lead Sponsor
T
The University of New South Wales
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
CTNNB1 Neurodevelopmental Syndrome - Natural History Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Clinically and genetically confirmed diagnosis of CTNNB1 syndrome.
- Age 0-99 years.
- Written informed consent or online consent to participate from a primary carer (parent or legal guardian).
You will not qualify if you...
- Participation in a clinical trial of a potential treatment for CTNNB1 syndrome.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 2 locations
1
Sydney Children's Hospital
Sydney, Australia
Not Yet Recruiting
2
University Medical Centre Ljubljana
Ljubljana, Slovenia, 1000
Actively Recruiting
Research Team
D
Damjan Osredkar, MD, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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