Status:
RECRUITING
CTNNB1 Neurodevelopmental Syndrome - Natural History Study
Lead Sponsor:
University Medical Centre Ljubljana
Collaborating Sponsors:
The University of New South Wales
University of Ljubljana School of Medicine, Slovenia
Conditions:
CTNNB1 Neurodevelopmental Syndrome
Eligibility:
All Genders
Brief Summary
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 comprehe...
Detailed Description
CTNNB1 syndrome is a rare debilitating neurodevelopmental disorder caused by mutations in the CTNNB1 gene, which is characterised by developmental delay and intellectual disability. Due to its relativ...
Eligibility Criteria
Inclusion
- 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).
Exclusion
- Child/adult with CTNNB1 syndrome participating in a clinical trial of a potential treatment for the syndrome.
Key Trial Info
Start Date :
June 14 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
January 1 2030
Estimated Enrollment :
250 Patients enrolled
Trial Details
Trial ID
NCT07167732
Start Date
June 14 2024
End Date
January 1 2030
Last Update
September 22 2025
Active Locations (2)
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1
Sydney Children's Hospital
Sydney, Australia
2
University Medical Centre Ljubljana
Ljubljana, Slovenia, 1000