-
Autor
Arzimanoglou, Alexis 1 Baumgartner, Tobias 1 Bisulli, Francesca 1 Boni, Antonella 1 Braun, Kees P J 1 Brázdil, Milan 1 Canafoglia, Laura 1 Carreño, Mar 1 Craiu, Dana 1 Cross, J Helen 1 Domańska-Pakiea, Dorota 1 Elisak, Martin 1 Franco, Ana 1 Granata, Tiziana 1 Guerrini, Renzo 1 Hallböök, Tove 1 Horak, Ondrej 1 Johannessen Landmark, Cecilie 1 Kalviainen, Reetta 1 Kotulska, Katarzyna 1
-
Pracoviště
Alexandru Obregia Clinical Hospital B... 1 Brno Epilepsy Center Department of Ch... 1 Brno Epilepsy Center Department of Ne... 1 CHRU LILLE Epilepsy Unit Lille France 1 Centro Hospitalar Universitário Lisbo... 1 Centro Hospitalar Universitário do Po... 1 Centro Hospitalar e Universitario de ... 1 Children's Hospital A Meyer Universit... 1 Departement of Neurology Charles Univ... 1 Department of Child Neurology Univers... 1 Department of Epileptology University... 1 Department of Functional Neurology an... 1 Department of Paediatric Clinical Epi... 1 Department of Paediatric Neurology Ch... 1 Department of Pediatric Neurology APH... 1 Department of Pediatric Neuroscience ... 1 Department of Pediatrics Institute of... 1 Department of Pharmacology Oslo Unive... 1 Epilepsy Center Faculty of Medicine U... 1 Epilepsy Centre Faculty of Health and... 1
- Formát
- Publikační typ
- Kategorie
- Jazyk
- Země
- Časopis/zdroj
- Dostupnost
- Vlastník
-
Autor
Arzimanoglou, Alexis 1 Baumgartner, Tobias 1 Bisulli, Francesca 1 Boni, Antonella 1 Braun, Kees P J 1 Brázdil, Milan 1 Canafoglia, Laura 1 Carreño, Mar 1 Craiu, Dana 1 Cross, J Helen 1 Domańska-Pakiea, Dorota 1 Elisak, Martin 1 Franco, Ana 1 Granata, Tiziana 1 Guerrini, Renzo 1 Hallböök, Tove 1 Horak, Ondrej 1 Johannessen Landmark, Cecilie 1 Kalviainen, Reetta 1 Kotulska, Katarzyna 1
-
Pracoviště
Alexandru Obregia Clinical Hospital B... 1 Brno Epilepsy Center Department of Ch... 1 Brno Epilepsy Center Department of Ne... 1 CHRU LILLE Epilepsy Unit Lille France 1 Centro Hospitalar Universitário Lisbo... 1 Centro Hospitalar Universitário do Po... 1 Centro Hospitalar e Universitario de ... 1 Children's Hospital A Meyer Universit... 1 Departement of Neurology Charles Univ... 1 Department of Child Neurology Univers... 1 Department of Epileptology University... 1 Department of Functional Neurology an... 1 Department of Paediatric Clinical Epi... 1 Department of Paediatric Neurology Ch... 1 Department of Pediatric Neurology APH... 1 Department of Pediatric Neuroscience ... 1 Department of Pediatrics Institute of... 1 Department of Pharmacology Oslo Unive... 1 Epilepsy Center Faculty of Medicine U... 1 Epilepsy Centre Faculty of Health and... 1
- Formát
- Publikační typ
- Kategorie
- Jazyk
- Země
- Časopis/zdroj
- Dostupnost
- Vlastník
NLK
Directory of Open Access Journals
od 2016
PubMed Central
od 2016
Europe PubMed Central
od 2016
ProQuest Central
od 2016-09-01
Open Access Digital Library
od 2016-09-01
Health & Medicine (ProQuest)
od 2016-09-01
Wiley-Blackwell Open Access Titles
od 2016
PubMed
33681659
DOI
10.1002/epi4.12459
Knihovny.cz E-zdroje
Objective: Clinical care of rare and complex epilepsies is challenging, because evidence-based treatment guidelines are scarce, the experience of many physicians is limited, and interdisciplinary treatment of comorbidities is required. The pathomechanisms of rare epilepsies are, however, increasingly understood, which potentially fosters novel targeted therapies. The objectives of our survey were to obtain an overview of the clinical practice in European tertiary epilepsy centers treating patients with 5 arbitrarily selected rare epilepsies and to get an estimate of potentially available patients for future studies. Methods: Members of the European Reference Network for rare and complex epilepsies (EpiCARE) were invited to participate in a web-based survey on clinical practice of patients with Dravet syndrome, tuberous sclerosis complex (TSC), autoimmune encephalitis, and progressive myoclonic epilepsies including Unverricht Lundborg and Unverricht-like diseases. A consensus-based questionnaire was generated for each disease. Results: Twenty-six of 30 invited epilepsy centers participated. Cohorts were present in most responding centers for TSC (87%), Dravet syndrome (85%), and autoimmune encephalitis (71%). Patients with TSC and Dravet syndrome represented the largest cohorts in these centers. The antiseizure drug treatments were rather consistent across the centers especially with regard to Dravet syndrome, infantile spasms in TSC, and Unverricht Lundborg / Unverricht-like disease. Available, widely used targeted therapies included everolimus in TSC and immunosuppressive therapies in autoimmune encephalitis. Screening for comorbidities was routinely done, but specific treatment protocols were lacking in most centers. Significance: The survey summarizes the current clinical practice for selected rare epilepsies in tertiary European epilepsy centers and demonstrates consistency as well as heterogeneity in the treatment, underscoring the need for controlled trials and recommendations. The survey also provides estimates for potential participants of clinical trials recruited via EpiCARE, emphasizing the great potential of Reference Networks for future studies to evaluate new targeted therapies and to identify novel biomarkers.
- Publikační typ
- časopisecké články MeSH
Upřesnit dle MeSH
Sdílet
Název dokumentu
Po ukončení testovacího provozu bude odkaz přesměrován adresu produkční verze portálu Medvik.