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Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND).
Nanetti, Lorenzo; Kearney, Mary; Boesch, Sylvia; Stovickova, Lucie; Ortigoza-Escobar, Juan Darío; Macaya, Alfons; Gomez-Andres, David; Roze, Emmanuel; Molnar, Maria-Judit; Wolf, Nicole I; Darling, Alejandra; Vasco, Gessica; Bertini, Enrico; Indelicato, Elisabetta; Neubauer, David; Haack, Tobias B; Sagi, Judit C; Danti, Federica R; Sival, Deborah; Zanni, Ginevra; Kolk, Anneli; Boespflug-Tanguy, Odile; Schols, Ludger; van de Warrenburg, Bart; Vidailhet, Marie; Willemsen, Michèl A; Buizer, Annemieke I; Orzes, Enrico; Ripp, Sophie; Reinhard, Carola; Moroni, Isabella; Mariotti, Caterina.
Afiliação
  • Nanetti L; Unit of Medical Genetics and Neurogenetics, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria, 11, 20133, Milan, Italy.
  • Kearney M; Patient Advocate at the European Reference Network Representing Individuals With Ataxia, and Neurology Research Fellow at the National Ataxia Centre, Tallaght University, Dublin, Ireland.
  • Boesch S; Center for Rare Movement Disorders, Department of Neurology, Innsbruck, Austria.
  • Stovickova L; Centre of Hereditary Ataxias, Department of Pediatric Neurology, Second Faculty of Medicine and Motol University Hospital, Prague, Czech Republic.
  • Ortigoza-Escobar JD; Pediatric Neurology Department, Institut de Recerca Hospital Sant Joan de Déu Barcelona, Barcelona, Spain.
  • Macaya A; Pediatric Neurology, Vall d'Hebron Institut de Recerca, Hospital Universitari Vall d'Hebron, Vall d'Hebron Barcelona Hospital Campus, and Universitat Autònoma de Barcelona, Bellaterra, Spain.
  • Gomez-Andres D; Pediatric Neurology, Vall d'Hebron Institut de Recerca, Hospital Universitari Vall d'Hebron, Vall d'Hebron Barcelona Hospital Campus, and Universitat Autònoma de Barcelona, Bellaterra, Spain.
  • Roze E; Sorbonne University, INSERM, CNRS, Paris Brain Institute, APHP Salpêtrière Hospital, Paris, France.
  • Molnar MJ; Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Budapest, Hungary.
  • Wolf NI; Amsterdam Leukodystrophy Center, Department of Child Neurology, Emma's Children's Hospital, Vrije Universiteit Amsterdam, Amsterdam Neuroscience, Cellular & Molecular Mechanisms, Amsterdam, The Netherlands.
  • Darling A; Pediatric Neurology Department, Institut de Recerca Hospital Sant Joan de Déu Barcelona, Barcelona, Spain.
  • Vasco G; Research Unit of Neurorehabilitation, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.
  • Bertini E; Unit of Neuromuscular and Neurodegenerative Disease, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.
  • Indelicato E; Center for Rare Movement Disorders, Department of Neurology, Innsbruck, Austria.
  • Neubauer D; UMCL, Children's Hospital Ljubljana and University of Ljubljana, Ljubljana, Slovenia.
  • Haack TB; Institute of Medical Genetics and Applied Genomics University of Tübingen, Tübingen, Germany.
  • Sagi JC; Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Budapest, Hungary.
  • Danti FR; Department of Paediatrics, Semmelweis University, Dept. of Genetics, Cell- and Immunobiology, Semmelweis University, Budapest, Hungary.
  • Sival D; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
  • Zanni G; Department of Paediatric Neurology, Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
  • Kolk A; Unit of Neuromuscular and Neurodegenerative Disease, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.
  • Boespflug-Tanguy O; Tartu University Hospital Children's Clinic, Department of Pediatrics and Neurology, Tartu, Estonia.
  • Schols L; APHP, Université Paris Cité, INSERM UMR1141, Hôpital Robert Debré, Service de Neuropédiatrie, Centre de Reference LEUKOFRANCE, Paris, France.
  • van de Warrenburg B; Department of Neurology and Hertie Institute for Clinical Brain Research, University of Tübingen, and German Center for Neurodegenerative Diseases, Tübingen, Germany.
  • Vidailhet M; Donders Institute for Brain, Cognition, and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
  • Willemsen MA; Sorbonne University, INSERM, CNRS, Paris Brain Institute, APHP Salpêtrière Hospital, Paris, France.
  • Buizer AI; Donders Institute for Brain, Cognition, and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
  • Orzes E; Department of Rehabilitation Medicine, Emma Children's Hospital, Amsterdam, Vrije Universiteit, Amsterdam, Amsterdam Movement Science, Rehabilitation and Development, Amsterdam, The Netherlands.
  • Ripp S; Osservatorio Malattie Rare - Rarelab S.R.L., Rome, Italy.
  • Reinhard C; Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen, Tübingen, Germany.
  • Moroni I; Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen, Tübingen, Germany.
  • Mariotti C; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
Neurol Sci ; 45(3): 1007-1016, 2024 Mar.
Article em En | MEDLINE | ID: mdl-37853291
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Atenção à Saúde / Doenças do Sistema Nervoso Limite: Adolescent / Adult / Child / Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2024 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Atenção à Saúde / Doenças do Sistema Nervoso Limite: Adolescent / Adult / Child / Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2024 Tipo de documento: Article