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A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies

2021Journal article Open access
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dc.contributor.authorBaumgartner, Tobias
dc.contributor.authorCarreño, Mar
dc.contributor.authorRocamora, Rodrigo
dc.contributor.authorBisulli, Francesca
dc.contributor.authorBoni, Antonella
dc.contributor.authorBrázdil, Milan
dc.contributor.authorHorak, Ondrej
dc.contributor.authorCraiu, Dana
dc.contributor.authorPereira, Cristina
dc.contributor.authorGuerrini, Renzo
dc.contributor.authorSan Antonio‐Arce, Victoria
dc.contributor.authorSchulze‐Bonhage, Andreas
dc.contributor.authorZuberi, Sameer M.
dc.contributor.authorHallböök, Tove
dc.contributor.authorKalviainen, Reetta
dc.contributor.authorLagae, Lieven
dc.contributor.authorNguyen, Sylvie
dc.contributor.authorQuintas, Sofia
dc.contributor.authorFranco, Ana
dc.contributor.authorCross, J. Helen
dc.contributor.authorWalker, Matthew
dc.contributor.authorArzimanoglou, Alexis
dc.contributor.authorRheims, Sylvain
dc.contributor.authorGranata, Tiziana
dc.contributor.authorCanafoglia, Laura
dc.contributor.authorJohannessen Landmark, Cecilie
dc.contributor.authorSen, Arjune
dc.contributor.authorRattihalli, Rohini
dc.contributor.authorNabbout, Rima
dc.contributor.authorTartara, Elena
dc.contributor.authorSantos, Manuela
dc.contributor.authorPereira Rangel Pinho, Rui Jorge
dc.contributor.authorKrsek, Pavel
dc.contributor.authorMarusic, Petr
dc.contributor.authorSpecchio, Nicola
dc.contributor.authorBraun, Kees P. J.
dc.contributor.authorSmeyers, Patricia
dc.contributor.authorVillanueva, Vicente
dc.contributor.authorKotulska, Katarzyna
dc.contributor.authorSurges, Rainer
dc.date.accessioned2023-10-24T10:42:48Z
dc.date.available2023-10-24T10:42:48Z
dc.date.issued2021
dc.description.abstractObjective: 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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBaumgartner T, Carreño M, Rocamora R, et al. A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies. Epilepsia Open. 2021;6(1):160-170. doi:10.1002/epi4.12459pt_PT
dc.identifier.doi10.1002/epi4.12459pt_PT
dc.identifier.issn2470-9239
dc.identifier.urihttp://hdl.handle.net/10400.16/2845
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherJohn Wiley & Sonspt_PT
dc.relation.publisherversionhttps://onlinelibrary.wiley.com/doi/10.1002/epi4.12459pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/pt_PT
dc.subjectDravet syndromept_PT
dc.subjectautoimmune encephalitispt_PT
dc.subjectorphan diseasept_PT
dc.subjectprogressive myoclonic epilepsypt_PT
dc.subjecttargeted therapiespt_PT
dc.subjecttuberous sclerosis complexpt_PT
dc.titleA survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsiespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceUnited States of Americapt_PT
oaire.citation.endPage170pt_PT
oaire.citation.issue1pt_PT
oaire.citation.startPage160pt_PT
oaire.citation.titleEpilepsia Openpt_PT
oaire.citation.volume6pt_PT
person.familyNamePereira Rangel Pinho
person.givenNameRui Jorge
person.identifier.orcid0000-0002-5423-4131
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication82dfb3a1-73e9-490b-83a5-1219a71292b6
relation.isAuthorOfPublication.latestForDiscovery82dfb3a1-73e9-490b-83a5-1219a71292b6

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