Plain-English translation of NCT07167732 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
The Dragonfly Study is following people with CTNNB1 syndrome — a rare genetic condition that affects brain development and learning — to understand how the condition changes over time. Researchers across five countries want to learn more about how this condition affects movement, thinking, behavior, vision, and sleep, so they can eventually develop better treatments. Right now, there is no cure for CTNNB1 syndrome, but early laboratory research has shown promise for genetic therapies being developed.
CTNNB1 syndrome was only recently discovered, and doctors know very little about how it progresses or what to expect. This study exists to gather detailed information about the condition from many patients around the world, which will help researchers understand the disease better and develop future treatments.
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You would visit the study clinic once a year for 5 years. During each visit, a doctor will examine your nervous system, test your movement and thinking abilities, check your vision, and ask about sleep and behavior. You'll also have blood tests, and the study team will arrange for brain scans (MRI) and eye imaging (OCT) to be done at your local hospital. If you're a parent or caregiver, you'll fill out questionnaires about how the condition affects daily life and family well-being. There is no medication to take as part of this study — it's purely observational, meaning researchers are watching and learning, not testing a new treatment.
AI-generated summary from trial data · Jun 2, 2026 · Not medical advice
Australia
Slovenia