The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study

The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study

ObjectiveThe appropriate management of patients with Dravet Syndrome (DS) is challenging, given the severity of symptoms and the burden of the disease for patients and caregivers. This study aimed to identify, through a qualitative methodology and a Delphi consensus-driven process, a set of recommen...

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Bibliographic Details
Main Authors: Ángel Aledo-Serrano, Ana Mingorance, Vicente Villanueva, Juan José García-Peñas, Antonio Gil-Nagel, Susana Boronat, JoséÁngel Aibar, Silvia Cámara, María José Yániz, Luis Miguel Aras, Bárbara Blanco, Rocío Sánchez-Carpintero
Format: Article
Language:English
Published: Frontiers Media S.A. 2022-09-01
Series:Frontiers in Neurology
Subjects:
neurodevelopment
developmental and epileptic encephalopathies
epilepsy
genetic epilepsy
caregivers
patient-reported outcomes
Online Access:https://www.frontiersin.org/articles/10.3389/fneur.2022.975034/full

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https://www.frontiersin.org/articles/10.3389/fneur.2022.975034/full

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