CTNNB1 Neurodevelopmental Syndrome - Natural History Study

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.

NCT Number	NCT07167732
Lead Sponsor	University Medical Centre Ljubljana Collaborators: The University of New South Wales, University of Ljubljana School of Medicine, Slovenia, CTNNB1 Foundation
Conditions	CTNNB1 Neurodevelopmental Syndrome
Enrollment	250 participants
Start Date	2024-06-14
Primary Completion	2029-06 (estimated)
Study Completion	2030-01 (estimated)
Updated on ClinicalTrials.gov	2025-09-22