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.
Disclaimer
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This is a summary of
the original study
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Sydney Children's Hospital
NOT_YET_RECRUITINGSydney, Australia
Contact
Contact Email: •••••@•••••
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University Medical Centre Ljubljana
RECRUITINGLjubljana, 1000, Slovenia
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Contact
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