From first seizure to specific antiseizure medication in Dravet syndrome: Quantifying delays in the DS'coverED study.
Dravet syndrome diagnosis is delayed a median of 11 months after first seizure.
From first seizure to specific antiseizure medication in Dravet syndrome: Quantifying delays in the DS'coverED study.
Dravet syndrome (dravet syndrome) is a rare early-onset developmental and epileptic encephalopathy with persistent delays between seizure onset and diagnosis.
The dravet syndrome'coverED study aimed to characterize current diagnostic timelines by examining each step and its duration, identifying residual barriers, and actionable solutions to optimize the diagnostic process within real-world clinical pathways.
A steering committee-eight pediatric neurologists and one representative from the dravet syndrome European Federation-developed a survey addressed to European pediatric neurologists experienced in dravet syndrome management.
Analysis of 45 patient diagnostic pathways revealed marked heterogeneity in the dravet syndrome diagnostic pathway.
While half of the patients received a diagnosis within 1 year of seizure onset, 25% were diagnosed after 23 months of age.
Although 45% of responders requested genetic testing promptly after initial consultation, more than half waited for confirmatory results before formally communicating the diagnosis.
The diagnosis of Dravet syndrome, a rare and severe form of childhood epilepsy, is still often delayed after the first seizure.
The dravet syndrome'coverED European survey explored each step of the diagnostic journey and identified residual barriers and opportunities to optimize the time to diagnosis and access to Dravet syndrome-specific antiseizure medications.
It provides physicians with actionable solutions that can help improve the diagnostic process of the condition.