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A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies
T. Baumgartner, M. Carreño, R. Rocamora, F. Bisulli, A. Boni, M. Brázdil, O. Horak, D. Craiu, C. Pereira, R. Guerrini, V. San Antonio-Arce, A. Schulze-Bonhage, SM. Zuberi, T. Hallböök, R. Kalviainen, L. Lagae, S. Nguyen, S. Quintas, A. Franco,...
Jazyk angličtina Země Spojené státy americké
Typ dokumentu časopisecké články
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
- Publikační typ
- časopisecké články MeSH
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.
Alexandru Obregia Clinical Hospital Bucharest Romania
Centro Hospitalar e Universitario de Coimbra Coimbra Portugal
Centro Hospitalar Universitário do Porto Porto Portugal
Centro Hospitalar Universitário Lisboa Norte Hospital de Santa Maria Lisboa Portugal
Children's Hospital A Meyer University of Florence Florence Italy
CHRU LILLE Epilepsy Unit Lille France
Department of Child Neurology University Medical Center Utrecht Utrecht The Netherlands
Department of Epileptology University Hospital Bonn Bonn Germany
Department of Paediatric Neurology Children's Hospital John Radcliffe Hospital Oxford UK
Department of Pediatric Neuroscience Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy
Epilepsy Center Faculty of Medicine University Medical Center Freiburg Germany
Epilepsy Unit Child Neurology Department Hospital San Juan de Dios Barcelona Spain
Epilepsy Unit Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy
Great Ormond Street Hospital for Children NHS Trust London UK
Hospital Clinic de Barcelona Barcelona Spain
IRCCS Istituto delle Scienze Neurologiche di Bologna Bologna Italy
IRCCS Mondino Foundation Pavia Italy
Pohjois Savon Sairaanhoitopiiri Kuopio University Hospital Kuopio Finland
Queen Elizabeth University Hospitals Campus Glasgow UK
Refractory Epilepsy Unit of Hospital Universitario y Politécnico La Fe Valencia Spain
The Children's Memorial Health Institute Warsaw Poland
University College London Hospitals NHS Foundation Trust London UK
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- $a A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies / $c T. Baumgartner, M. Carreño, R. Rocamora, F. Bisulli, A. Boni, M. Brázdil, O. Horak, D. Craiu, C. Pereira, R. Guerrini, V. San Antonio-Arce, A. Schulze-Bonhage, SM. Zuberi, T. Hallböök, R. Kalviainen, L. Lagae, S. Nguyen, S. Quintas, A. Franco, JH. Cross, M. Walker, A. Arzimanoglou, S. Rheims, T. Granata, L. Canafoglia, C. Johannessen Landmark, A. Sen, R. Rattihalli, R. Nabbout, E. Tartara, M. Santos, R. Rangel, P. Krsek, P. Marusic, N. Specchio, KPJ. Braun, P. Smeyers, V. Villanueva, K. Kotulska, R. Surges, P. Tinuper, L. Licchetta, R. Michelucci, J. Toulouse, E. Panagiotakaki, K. Ostrowsky-Coste, G. Lesca, M. de Curtis, M. Elisak, D. Domańska-Pakiea, K. Sadowski
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- 700 1_
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- 700 1_
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- 700 1_
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