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Following people with CTNNB1 syndrome as they grow and change over time

Tracks how development and abilities change in children and adults with CTNNB1 syndrome.

Plain-language title generated from the registry record
Registry title: CTNNB1 Neurodevelopmental Syndrome - Natural History Study

Key facts

Where
Sydney, AustraliaSee the site

Where in Australia

  • Sydney Children's HospitalSydney, AustraliaNot yet recruiting

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?
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Trial details

Who runs it
University Medical Centre Ljubljana
Trial code
NCT07167732
Record updated
22 September 2025
Original description
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.Read full original descriptionShow less

Dragonfly Study: An International, Prospective, Longitudinal, Observational Natural History Study of Children and Adults Living With CTNNB1 Neurodevelopmental Syndrome

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.

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.

ClinicalTrials.gov NCT07167732