Ultra-refractory epilepsy: The newly described entity

J 2025

Ultra-refractory epilepsy: The newly described entity

VINKLÁREK, Jan; Petra BÚŘILOVÁ; Mojdeh RAOUF ZADEH JAHROMI; Eva ZATLOUKALOVA; Jitka KOCVAROVA et al.

Základní údaje

Originální název

Ultra-refractory epilepsy: The newly described entity

Autoři

Vydání

Epilepsia Open, HOBOKEN, WILEY, 2025, 2470-9239

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30230 Other clinical medicine subjects

Stát vydavatele

Spojené státy

Utajení

není předmětem státního či obchodního tajemství

Odkazy

EPI

Impakt faktor

Impact factor: 2.900 v roce 2024

Organizační jednotka

CZECRIN IV

DOI

https://doi.org/10.1002/epi4.70196

UT WoS

001633608600001

Klíčová slova česky

antiseizure medication; drug-resistant epilepsy; neurostimulation; resective brain surgery; ultra-refractory epilepsy

Klíčová slova anglicky

antiseizure medication; drug-resistant epilepsy; neurostimulation; resective brain surgery; ultra-refractory epilepsy

Štítky

CZECRIN, Excelence Science, FNUSA, RIV, user, článek v časopise

Příznaky

Mezinárodní význam, Recenzováno

Změněno: 28. 1. 2026 10:47, Bc. Hana Vladíková, BBA

Anotace

V originále

Objective: Drug-resistant epilepsy (DRE) is defined as the failure of two antiseizure medications (ASMs) to achieve complete seizure control, affecting approximately 30% of epilepsy patients. In some cases, additional ASMs and surgical approaches are also unsuccessful. Ultra-Refractory Epilepsy (URE) is a newly described entity, characterized by the failure of six distinct epilepsy treatment strategies, including ASMs, surgical resection, and neurostimulation techniques. This study aimed to analyze demographic and clinical data of URE patients managed at the Brno Epilepsy Center, a member of the European Reference Network (ERN)-EpiCARE. Methods: We conducted a retrospective cohort study with a prospective follow-up component. Adult patients hospitalized for epilepsy at the Brno Epilepsy Center between 2017 and 2023 were retrospectively identified, and their outcomes were prospectively assessed in February 2025 through medical record review and structured telephone interviews. URE patients were identified, and their demographic and clinical data were analyzed. Results: In this study, 1034 patients' charts were reviewed, and 62 patients (6%) met the criteria for URE. In the URE cohort, the median age of epilepsy onset was 9 years (range 1-60 years), and the median age at the time of evaluation was 35 years (range 21-67 years). The median seizure frequency was nine seizures per month (range 1-900), with 26 (42%) of patients experiencing extremely high seizure frequencies (>20 seizures/month). Structural etiology was the most common cause (29 [47%] patients). Among the cohort, 57 (92%) patients received a combination of ASMs, surgical resection, or neurostimulation, while only 5 (8%) patients were managed exclusively with ASMs. Significance: URE represents an extreme therapeutic challenge within epilepsy centers. The high seizure burden and limited treatment response in this population highlight the urgent need for novel therapeutic strategies and further research into this newly defined entity.

Návaznosti

90249, velká výzkumná infrastruktura

Název: CZECRIN IV

Citovat

VINKLÁREK, Jan; Petra BÚŘILOVÁ; Mojdeh RAOUF ZADEH JAHROMI; Eva ZATLOUKALOVA; Jitka KOCVAROVA; Ondrej STRYCEK; Martin PAIL; Klara STILLOVA; Jan CHRASTINA; Eva BRICHTOVA; Andrea POKORNA; Dana MAZÁNKOVÁ; Milan BRÁZDIL a Irena DOLEŽALOVÁ. Ultra-refractory epilepsy: The newly described entity. Epilepsia Open. HOBOKEN: WILEY, 2025, na, na, s. 1-10. ISSN 2470-9239. Dostupné z: https://doi.org/10.1002/epi4.70196.

@article{2548327,
   author = {Vinklárek, Jan and Búřilová, Petra and Raouf zadeh jahromi, Mojdeh and Zatloukalova, Eva and Kocvarova, Jitka and Strycek, Ondrej and Pail, Martin and Stillova, Klara and Chrastina, Jan and Brichtova, Eva and Pokorna, Andrea and Mazánková, Dana and Brázdil, Milan and Doležalová, Irena},
   article_location = {HOBOKEN},
   article_number = {na},
   doi = {https://doi.org/10.1002/epi4.70196},
   keywords = {antiseizure medication; drug-resistant epilepsy; neurostimulation; resective brain surgery; ultra-refractory epilepsy},
   language = {eng},
   issn = {2470-9239},
   journal = {Epilepsia Open},
   title = {Ultra-refractory epilepsy: The newly described entity},
   url = {https://onlinelibrary.wiley.com/doi/epdf/10.1002/epi4.70196?getft_integrator=clarivate&src=getftr&utm_source=clarivate},
   volume = {na},
   year = {2025}
}

TY  - JOUR
ID  - 2548327
AU  - Vinklárek, Jan - Búřilová, Petra - Raouf zadeh jahromi, Mojdeh - Zatloukalova, Eva - Kocvarova, Jitka - Strycek, Ondrej - Pail, Martin - Stillova, Klara - Chrastina, Jan - Brichtova, Eva - Pokorna, Andrea - Mazánková, Dana - Brázdil, Milan - Doležalová, Irena
PY  - 2025
TI  - Ultra-refractory epilepsy: The newly described entity
JF  - Epilepsia Open
VL  - na
IS  - na
SP  - 1-10
EP  - 1-10
PB  - WILEY
SN  - 24709239
KW  - antiseizure medication
KW  - drug-resistant epilepsy
KW  - neurostimulation
KW  - resective brain surgery
KW  - ultra-refractory epilepsy
UR  - https://onlinelibrary.wiley.com/doi/epdf/10.1002/epi4.70196?getft_integrator=clarivate&src=getftr&utm_source=clarivate
N2  - Objective: Drug-resistant epilepsy (DRE) is defined as the failure of two antiseizure medications (ASMs) to achieve complete seizure control, affecting approximately 30% of epilepsy patients. In some cases, additional ASMs and surgical approaches are also unsuccessful. Ultra-Refractory Epilepsy (URE) is a newly described entity, characterized by the failure of six distinct epilepsy treatment strategies, including ASMs, surgical resection, and neurostimulation techniques. This study aimed to analyze demographic and clinical data of URE patients managed at the Brno Epilepsy Center, a member of the European Reference Network (ERN)-EpiCARE. Methods: We conducted a retrospective cohort study with a prospective follow-up component. Adult patients hospitalized for epilepsy at the Brno Epilepsy Center between 2017 and 2023 were retrospectively identified, and their outcomes were prospectively assessed in February 2025 through medical record review and structured telephone interviews. URE patients were identified, and their demographic and clinical data were analyzed. Results: In this study, 1034 patients' charts were reviewed, and 62 patients (6%) met the criteria for URE. In the URE cohort, the median age of epilepsy onset was 9 years (range 1-60 years), and the median age at the time of evaluation was 35 years (range 21-67 years). The median seizure frequency was nine seizures per month (range 1-900), with 26 (42%) of patients experiencing extremely high seizure frequencies (>20 seizures/month). Structural etiology was the most common cause (29 [47%] patients). Among the cohort, 57 (92%) patients received a combination of ASMs, surgical resection, or neurostimulation, while only 5 (8%) patients were managed exclusively with ASMs. Significance: URE represents an extreme therapeutic challenge within epilepsy centers. The high seizure burden and limited treatment response in this population highlight the urgent need for novel therapeutic strategies and further research into this newly defined entity.
ER  -

VINKLÁREK, Jan; Petra BÚŘILOVÁ; Mojdeh RAOUF ZADEH JAHROMI; Eva ZATLOUKALOVA; Jitka KOCVAROVA; Ondrej STRYCEK; Martin PAIL; Klara STILLOVA; Jan CHRASTINA; Eva BRICHTOVA; Andrea POKORNA; Dana MAZÁNKOVÁ; Milan BRÁZDIL a Irena DOLEŽALOVÁ. Ultra-refractory epilepsy: The newly described entity. \textit{Epilepsia Open}. HOBOKEN: WILEY, 2025, na, na, s.~1-10. ISSN~2470-9239. Dostupné z: https://doi.org/10.1002/epi4.70196.

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