A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies.
Tobias BaumgartnerMar CarreñoRodrigo RocamoraFrancesca BisulliAntonella BoniMilan BrázdilOndrej HorakDana CraiuCristina PereiraRenzo GuerriniVictoria San Antonio-ArceAndreas Schulze-BonhageSameer M ZuberiTove HallböökReetta KalviainenLieven LagaeSylvie NguyenSofia QuintasAna Catarina FrancoJudith Helen CrossMatthew WalkerAlexis ArzimanoglouSylvain RheimsTiziana GranataCanafoglia LauraCecilie Johannessen LandmarkArjune SenRohini RattihalliRima NabboutElena TartaraManuela SantosRui RangelPavel KrsekPetr MarusicNicola SpecchioKees P J BraunPatricia SmeyersVicente VillanuevaKatarzyna KotulskaRainer SurgesPaolo TinuperLaura LicchettaRoberto MichelucciJoseph ToulouseEleni PanagiotakakiKarine Ostrowsky-CosteGaetan LescaMarco de CurtisMartin ElisakDorota Domańska-PakieaKrzysztof SadowskiPublished in: Epilepsia open (2021)
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.