369e1b28a8e8261064ebbd23f1580579 275174.pdf 991eed4b906fca6b7c14c556502c6f88579993d8 275174.pdf 4970ff84832efd7df8c7019fbd0702aa5f692c4b58bea9816501666a877b8ee2 275174.pdf Title: The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study Subject: Objective: The 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. Keywords: neurodevelopment, developmental and epileptic encephalopathies, epilepsy, genetic epilepsy, caregivers, patient-reported outcomes, SCN1A Author: Ángel Aledo-Serrano Creator: LaTeX with hyperref package + hypdvips Producer: dvips + MiKTeX GPL Ghostscript 9.0 CreationDate: Sat Aug 27 03:55:44 2022 CEST ModDate: Sat Aug 27 04:58:13 2022 CEST Tagged: no UserProperties: no Suspects: no Form: none JavaScript: no Pages: 17 Encrypted: no Page size: 595.26 x 842.116 pts (A4) Page rot: 0 File size: 605342 bytes Optimized: no PDF version: 1.6 name type encoding emb sub uni object ID ------------------------------------ ----------------- ---------------- --- --- --- --------- NXSHAY+MuseoSans-700 Type 1C Custom yes yes yes 40 0 TLXEQE+MuseoSans-300 Type 1C Custom yes yes yes 43 0 QHJMAR+MuseoSans-300Italic Type 1C WinAnsi yes yes no 55 0 AUEKCH+MinionPro-Regular Type 1C Custom yes yes no 58 0 JNAXFI+MuseoSans-500 Type 1C Custom yes yes yes 65 0 SFMGSH+MTSY Type 1C Custom yes yes no 68 0 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Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qual椀琀愀琀椀瘀攀 愀渀搀 䐀攀氀瀀栀椀 挀漀渀猀攀渀猀甀猀 猀琀甀搀礩㸾൥湤潢樍㘠〠潢樍㰼⽐慲敮琠㔠〠刯乥硴‷‰⁒⽄敳琯獥捴楯渪⸲⽁捴楯港䝯呯⽔楴汥⣾＀䤀渀琀爀漀搀甀挀琀椀漀温㸾൥湤潢樍㌲‰扪഼㰯偡牥湴‵‰⁒⽄敳琯獥捴楯渪⸲㠯䅣瑩潮⽇潔漯偲敶″ㄠ〠刯呩瑬攨References Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4d3167f4 Children: Item: Title: Introduction Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@ed9d034 Item: Title: Materials and methods Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@6121c9d6 Children: Item: Title: Study design Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@87f383f Item: Title: Study phases Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4eb7f003 Item: Title: Scientific committee Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@eafc191 Item: Title: Expert panel Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@612fc6eb Item: Title: Consensus definition Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@1060b431 Item: Title: Data analysis Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@612679d6 Item: Title: Ethical aspects Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@11758f2a Item: Title: Results Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@e720b71 Children: Item: Title: General aspects of the evaluation of the QoL of patients with DS Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@1b26f7b2 Item: Title: Evaluation of neurodevelopment in patients with DS Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@491cc5c9 Item: Title: Assessment of attention and behavior in patients with DS Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@74ad1f1f Item: Title: Assessment of other comorbidities that affect the QoL in patients with DS Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@6a1aab78 Item: Title: Sudden unexpected death in epilepsy Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@462d5aee Item: Title: Assessment of the QoL of caregivers/relatives Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@69b0fd6f Item: Title: Discussion Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@757942a1 Item: Title: Data availability statement Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4a87761d Item: Title: Ethics statement Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@66d1af89 Item: Title: The Charlotte Project group Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@8646db9 Item: Title: Author contributions Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@37374a5e Item: Title: Funding Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4671e53b Item: Title: Acknowledgments Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@2db7a79b Item: Title: Conflict of interest Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@6950e31 Item: Title: Publisher's note Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@b7dd107 Item: Title: Supplementary material Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@42eca56e Item: Title: References Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@52f759d7 Info: Title: The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study Author: Ángel Aledo-Serrano Subject: Objective: The 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. 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