UPDATE: The published article: Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey
On Dravet Syndrome Awareness Day 2016, the DSEF launched the DISCUSS survey to understand families who care for a son or daughter with Dravet syndrome. An impressive 584 caregivers from all over Europe participated – we estimate the survey captured about 15% of all patients with Dravet syndrome – making it the largest and most comprehensive of its kind carried out to date.
The survey results have been submitted for publication in a peer-reviewed scientific journal and at the European Paediatric Neurology Society’s annual congress in Lyon.
To mark this event, we’d like to share the EPNS poster with you and again thank all participants for taking the time to fill in the survey and all DSEF associated groups for their help with recruiting participants and piloting, proofing and translating the survey.