News

Behavioral development stable over time for Dravet children: Study

Behavioral development in children and teens with Dravet syndrome generally held stable in the first year of an observational study, though some showed small improvements in communication, according to researchers. Participants in the study, dubbed BUTTERFLY, continued to perform below what would be expected of their typically developing peers…

Encoded cleared to test ETX101 for Dravet syndrome in UK

Encoded Therapeutics has been cleared by the U.K. Medicines and Healthcare products Regulatory Agency (MHRA) to begin clinical testing of ETX101, an investigational one-time gene therapy for children with Dravet syndrome. A Phase 1/2 clinical study dubbed EXPEDITION will test how safe ETX101 is and how well it…

CBD-based Trunerox OK’d as add-on Dravet treatment

The National Institute of Drug and Food Surveillance (INVIMA) of Colombia has approved Trunerox as an add-on treatment for seizures in people with Dravet syndrome and Lennox-Gastaut syndrome (LGS). Trunerox, which was developed by the Canadian biopharmaceutical Avicanna, is a proprietary oral formulation of 10% cannabidiol…

WHO roadmap for better care to mark International Epilepsy Day

International Epilepsy Day for 2024 aims to promote public understanding of a condition thought to affect some 65 million people globally — including those with Dravet syndrome — to gather support for a 10-year World Health Organization (WHO) epilepsy roadmap. Held annually on the second Monday in February —…

Fintepla protects myelin, limits brain inflammation in Dravet mice

Fintepla (fenfluramine) eased brain inflammation, protected nerve cells from damage and death, and extended survival in a mouse model of Dravet syndrome, a study showed. “These results support clinical observations that [Fintepla] may have benefits beyond seizures,” its scientists wrote. The article, “Fenfluramine increases survival…

Cognitive, physiotherapy common with Dravet, but benefits not clear

Most Dravet syndrome patients utilize various types of therapies beyond medicines to manage the disease, including physiotherapy, occupational therapy, and psychological therapy, according to a recent survey of caregivers and family members in Spain. While survey respondents sometimes found these non-pharmacological interventions to be effective, sizable numbers were less…