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In search of "what really matters": Insights from a web-based survey on Patient-Centered Outcomes in GLUT1DS.

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Title: In search of "what really matters": Insights from a web-based survey on Patient-Centered Outcomes in GLUT1DS.
Authors: Varesio C; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy., Pasca L; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy., Zanaboni MP; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy. Electronic address: martinapaola.zanaboni@mondino.it., Bertoli S; International Center for the Assessment of Nutritional Status and the Development of Dietary Intervention Strategies (ICANS-DIS), Department of Food Environmental and Nutritional Sciences (DeFENS), University of Milan, IRCCS Istituto Auxologico Italiano, Obesity Unit and Laboratory of Nutrition and Obesity Research, Department of Endocrine and Metabolic Diseases, Milan, Italy., Brancaccio C; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy., Camerini A; Italian GLUT1-DS Association, Milan, Italy., Celario M; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy., Granata T; Department of Pediatric Neuroscience, Member of the European Reference Network EPIcare, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Grumi S; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy; Developmental Psychobiology Lab, IRCCS Mondino Foundation, Pavia, Italy., Lodi A; Italian GLUT1-DS Association, Milan, Italy., Marini C; Child Neurology and Psychiatric Unit, Salesi Children's Hospital, Ancona, Italy., Operto F; Department of Science of Health, School of Medicine, University Magna Graecia of Catanzaro, Catanzaro, Italy., Quaranta CA; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy., Ragona F; Department of Pediatric Neuroscience, Member of the European Reference Network EPIcare, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Striano P; IRCCS Istituto Giannina Gaslini, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Genoa, Italy; Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Università Degli Studi di Genova, Genoa, Italy., Tagliabue A; Ketogenic Metabolic Therapy Laboratory, Department of Public Health, Experimental and Forensic Medicine, University of Pavia, 27100, Pavia, Italy., Veggiotti P; Neuroscience Research Center, Department of Biomedical and Clinical Sciences, University of Milan, Milan, Italy; Pediatric Neurology Unit, Buzzi Children's Hospital, Milan, Italy., De Giorgis V; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.
Source: European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society [Eur J Paediatr Neurol] 2026 Jan; Vol. 60, pp. 101-108. Date of Electronic Publication: 2026 Jan 22.
Publication Type: Journal Article
Journal Info: Publisher: Saunders Country of Publication: England NLM ID: 9715169 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-2130 (Electronic) Linking ISSN: 10903798 NLM ISO Abbreviation: Eur J Paediatr Neurol Subsets: MEDLINE
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  Data: <searchLink fieldCode="AU" term="%22Varesio+C%22">Varesio C</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Pasca+L%22">Pasca L</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Zanaboni+MP%22">Zanaboni MP</searchLink>; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy. Electronic address: martinapaola.zanaboni@mondino.it.<br /><searchLink fieldCode="AU" term="%22Bertoli+S%22">Bertoli S</searchLink>; International Center for the Assessment of Nutritional Status and the Development of Dietary Intervention Strategies (ICANS-DIS), Department of Food Environmental and Nutritional Sciences (DeFENS), University of Milan, IRCCS Istituto Auxologico Italiano, Obesity Unit and Laboratory of Nutrition and Obesity Research, Department of Endocrine and Metabolic Diseases, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Brancaccio+C%22">Brancaccio C</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Camerini+A%22">Camerini A</searchLink>; Italian GLUT1-DS Association, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Celario+M%22">Celario M</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Granata+T%22">Granata T</searchLink>; Department of Pediatric Neuroscience, Member of the European Reference Network EPIcare, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Grumi+S%22">Grumi S</searchLink>; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy; Developmental Psychobiology Lab, IRCCS Mondino Foundation, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Lodi+A%22">Lodi A</searchLink>; Italian GLUT1-DS Association, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Marini+C%22">Marini C</searchLink>; Child Neurology and Psychiatric Unit, Salesi Children's Hospital, Ancona, Italy.<br /><searchLink fieldCode="AU" term="%22Operto+F%22">Operto F</searchLink>; Department of Science of Health, School of Medicine, University Magna Graecia of Catanzaro, Catanzaro, Italy.<br /><searchLink fieldCode="AU" term="%22Quaranta+CA%22">Quaranta CA</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Ragona+F%22">Ragona F</searchLink>; Department of Pediatric Neuroscience, Member of the European Reference Network EPIcare, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Striano+P%22">Striano P</searchLink>; IRCCS Istituto Giannina Gaslini, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Genoa, Italy; Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Università Degli Studi di Genova, Genoa, Italy.<br /><searchLink fieldCode="AU" term="%22Tagliabue+A%22">Tagliabue A</searchLink>; Ketogenic Metabolic Therapy Laboratory, Department of Public Health, Experimental and Forensic Medicine, University of Pavia, 27100, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Veggiotti+P%22">Veggiotti P</searchLink>; Neuroscience Research Center, Department of Biomedical and Clinical Sciences, University of Milan, Milan, Italy; Pediatric Neurology Unit, Buzzi Children's Hospital, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22De+Giorgis+V%22">De Giorgis V</searchLink>; Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.
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