Summary, originally published in Dravet Syndrome News
The first participant has been enrolled in Envision, a natural history study that will follow children with Dravet syndrome for more than two years as it seeks to shed light on how this severe type of epilepsy affects motor and neurological development, seizures, and behavior.
Envision also will assess Dravet’s impact on parents and caregivers, in addition to examining health care resource use among patients.
“Natural history studies are incredibly important to understanding and developing treatments for disease,” the Dravet Syndrome Foundation notes on its website in an informational page about Envision.
“The information collected from a natural history study can then be used as a reference to inform health care decisions, including preventative interventions,” the website said.
Envision, conducted by Encoded Therapeutics, is recruiting about 50 children, ages 6 months to 5 years (60 months) for the two-year study. To be eligible, children must have a clinical diagnosis of Dravet and a confirmed mutation in the SCN1A gene — the most common underlying cause of the syndrome, which leads to overactivation of the nervous system and the development of seizures. For more information on locations and contacts, go here.