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

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

Frontiers in neurology（2022）

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摘要

This consensus resulted in a set of recommendations for the assessment of clinical and QoL parameters, including PROs, related to the general evaluation of QoL, neurodevelopment, attention, behavior, other comorbidities affecting QoL, SUDEP, and QoL of caregivers/relatives and patients with DS.

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关键词

SCN1A,caregivers,developmental and epileptic encephalopathies,epilepsy,genetic epilepsy,neurodevelopment,patient-reported outcomes

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