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CTNNB1 Neurodevelopmental Syndrome - Natural History Study

Recruitingn/aAges any - anyAllUniversity Medical Centre Ljubljana
NCT07167732 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
Inclusion Criteria: * 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 Criteria: * Child/adult with CTNNB1 syndrome participating in a clinical trial of a potential treatment for the syndrome.
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What it tests

  • A General Medical and Neurological Assessment
  • World Health Organisation (WHO) Motor Milestones
  • Burke-Fahn-Marsden Dystonia Rating Scale
  • Spastic Paraplegia Rating Scale
  • 5. CTNNB1-Related Neurodevelopmental Disorder (NEDSDV) Cardiac Health Questionnaire
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Where

2 sites
Sydney Children's Hospital
Sydney, Australia
University Medical Centre Ljubljana
Ljubljana, Slovenia
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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