CTNNB1 syndrome is a severe, rare neurodevelopmental disorder. It affects all aspects of a patient’s life, including movement, speech, and the ability to live independently.
The effects on patients’ daily lives and the condition’s natural progression, often referred to as natural history, are still poorly understood. To create an effective cure or treatment for this disease, we must accurately understand how the disease progresses with treatment and how that differs from its natural course.
Sysnav Healthcare supports the CTNNB1 Foundation for the Dragonfly Study, the first international Natural History Study (NHS) for CTNNB1 Syndrome patients. Our flagship DHT Syde will be used for continuous evaluation of patient function in real life during the study.
This meaningful and reliable data will enhance our understanding of disease variability and the functional impact on daily life, offering deeper insights into the natural trajectory of CTNNB1 Syndrome.