Dragonfly study launches to map rare genetic syndrome
NCT ID NCT07167732
First seen Jun 26, 2026 · Last updated Jun 26, 2026
Summary
The Dragonfly study is an international observational project tracking the development of 250 children and adults with CTNNB1 neurodevelopmental syndrome. Researchers will collect medical history, perform neurological exams, and use questionnaires to understand how symptoms and abilities change over time. This information aims to improve patient care and help design future clinical trials.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this study could provide crucial data to design better treatments and improve care standards for CTNNB1 syndrome.
- What could go wrong
- This is an observational study, not a treatment trial. It will not directly test any therapy, and results may take years to impact patient care.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Sydney Children's Hospital
NOT_YET_RECRUITINGSydney, Australia
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University Medical Centre Ljubljana
RECRUITINGLjubljana, 1000, Slovenia
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Other studies related to the condition(s) this trial covers.