A European pilot study in Dravet Syndrome to delineate what really matters for the patients and families

A European pilot study in Dravet Syndrome to delineate what really matters for the patients and families

Abstract We aimed to identify caregivers' opinions on the outcome measures that matter in clinical trials in individuals with Dravet syndrome (DS). We conducted a prospective European multicenter study based on an 11 closed questions survey developed by the French reference center for rare epil...

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Bibliographic Details
Main Authors: Nicole Chemaly, Mathieu Kuchenbuch, Théo Teng, Elodie Marie, Gianluca D'Onofrio, Tommaso Lo Barco, Isabella Brambilla, Silke Flege, Anne‐Sophie Hallet, Rima Nabbout
Format: Article
Language:English
Published: Wiley 2024-02-01
Series:Epilepsia Open
Subjects:
burden of the disease
families’ expectations
meaningful change
meaningful outcomes
PCOMs
Online Access:https://doi.org/10.1002/epi4.12557

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