Evidence map›Paper›PMID 39825688›Full record

ReviewEpilepsia2025

New onset refractory status epilepticus: Long-term outcomes beyond seizures.

Poul H Espino, Krista Eschbach, Leah J Blank, Mackenzie C Cervenka, Eyal Muscal, Raquel Farias-Moeller, Emily J Gilmore, Margaret T Gopaul, Hiba A Haider, Aurelie Hanin and 22 more

Abstract readReview
In one paragraph

Review in Epilepsia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. ANA Investigates: NORSE and FIRES.Annals of neurology · 2026
    Article
  5. Article
  6. Review
  7. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

32 authors.

Poul H EspinoDepartment of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.ORCID https://orcid.org/0000-0001-5336-7031
Krista EschbachSection of Child Neurology, Department of Pediatrics, Children's Hospital Colorado, University of Colorado, Aurora, Colorado, USA.ORCID https://orcid.org/0000-0002-4249-338X
Leah J BlankDepartment of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.ORCID https://orcid.org/0000-0001-8719-6752
Mackenzie C CervenkaDepartment of Neurology, Johns Hopkins Hospital, Baltimore, Maryland, USA.ORCID https://orcid.org/0000-0002-4760-857X
Eyal MuscalDepartment of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.
Raquel Farias-MoellerDepartment of Neurology, Children's Hospital of Wisconsin, Milwaukee, Wisconsin, USA.ORCID https://orcid.org/0000-0001-8717-7703
Emily J GilmoreDepartment of Neurology, Comprehensive Epilepsy Center, Yale University School of Medicine, New Haven, Connecticut, USA.
Margaret T GopaulDepartment of Neurology, Comprehensive Epilepsy Center, Yale University School of Medicine, New Haven, Connecticut, USA.
Hiba A HaiderDepartment of Neurology, Comprehensive Epilepsy Center, University of Chicago, Chicago, Illinois, USA.ORCID https://orcid.org/0000-0001-7118-3690
Aurelie HaninDepartment of Neurology, Comprehensive Epilepsy Center, Yale University School of Medicine, New Haven, Connecticut, USA.
Lawrence J HirschDepartment of Neurology, Comprehensive Epilepsy Center, Yale University School of Medicine, New Haven, Connecticut, USA.ORCID https://orcid.org/0000-0002-6333-832X
Marissa A KelloggDepartment of Neurology, Oregon Health & Science University, Portland, Oregon, USA.
Gerhard KlugerResearch Institute for Rehabilitation, Transition, and Palliation, Paracelsus Medical University Salzburg, Salzburg, Austria.
Soon-Tae LeeDepartment of Neurology, Seoul National University Hospital, Seoul, South Korea.ORCID https://orcid.org/0000-0003-4767-7564
Alexandria E Melendez-ZaidiDivision of Neurology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, Texas, USA.ORCID https://orcid.org/0000-0001-6057-0206
Vincent NavarroEpilepsy Unit, Paris Brain Institute, AP-HP, Pitié-Salpêtrière Hospital, ERN EpiCARE, Sorbonne Université, Paris, France.ORCID https://orcid.org/0000-0003-0077-8114
Audrey C OligerDepartment of Neurology, Oregon Health & Science University, Portland, Oregon, USA.
Elena PasiniUnit of Neurology, Istituto di Ricovero e Cura a Carattere Scientifico-Istituto delle Scienze Neurologiche di Bologna, Bellaria Hospital, Bologna, Italy.ORCID https://orcid.org/0000-0001-6298-455X
Gitta ReunerInstitute of Education Studies, Heidelberg University, Heidelberg, Germany.ORCID https://orcid.org/0000-0002-9316-3129
Cynthia M SharpeUniversity of Auckland, Auckland, New Zealand.
Zubeda B SheikhDepartment of Neurology, Virginia Commonwealth University, Richmond, Virginia, USA.
Leon SteiglederUniversity of Ulm, Ulm, Germany.
Claude SteriadeDepartment of Neurology, NYU Langone Medical Center, New York, New York, USA.
Coral M StrednyDepartment of Neurology, Boston Children's Hospital, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0003-1176-640X
Adam StrzelczykDepartment of Neurology, Epilepsy Center Frankfurt Rhine-Main, University Medicine Frankfurt, Goethe University Frankfurt, Frankfurt am Main, Germany.ORCID https://orcid.org/0000-0001-6288-9915
Olga TaraschenkoDepartment of Neurological Sciences, University of Nebraska Medical Center, Omaha, Nebraska, USA.ORCID https://orcid.org/0000-0003-4848-8909
Andreas van BaalenDepartment of Neuropediatrics, University Medical Center Schleswig-Holstein, Kiel University (CAU), Kiel, Germany.ORCID https://orcid.org/0000-0001-7988-5224
Sarah A VinetteDivision of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Ronny WickströmNeuropediatric Unit, Department of Women's and Children's Health, Karolinska Institute and Karolinska University Hospital, Stockholm, Sweden.ORCID https://orcid.org/0000-0002-1183-150X
Nora W WongNORSE Institute, Summit, New Jersey, USA.
Jiyeoun YooDepartment of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.ORCID https://orcid.org/0000-0001-7242-9779
Teneille E GoftonDepartment of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.ORCID https://orcid.org/0000-0001-9001-4884

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

We propose and prioritize important outcome domains that should be considered for future research investigating long-term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing the LTO of NORSE survivors was identified using a PubMed search and summarized to identify knowledge gaps. Subsequently, a consensus-building process was performed to prioritize and rank important LTO domains for further research. The prioritization of LTO domains was qualitative, enabling the expert panel to generate ideas, share opinions, and provide reasons for the rankings. A second round took place to allow expansion and agreement regarding specific details for each domain. Outcomes were classified into eight main domains: (1) Function: Neuropsychological, Neurological (other than seizures), and Psychiatric (mood and behavior); (2) Quality of Life; (3) Epilepsy; (4) Nonneurological (medical); (5) Social; (6) Caregiver Burden; (7) Long-Term Mortality; and (8) Health Care System Impact. In addition, the working group suggested obtaining outcome measures for each domain at 6 months and 1 year after discharge and annually thereafter until stability has been reached. There are no currently established time frames set for when LTO in NORSE begin or plateau, and previously there existed no consensus regarding which LTO should be considered. This consensus process identifies and recommends NORSE LTO domains that should be considered in future research studies to provide more consistent results that can be compared between studies. Survivors of NORSE should be evaluated serially and at fixed points over time to maximize our understanding of the recovery trajectory for all LTO domains. Establishing reliable and standardized data describing LTO (beyond seizures) after NORSE will support discussions with families during the acute stages, prognostication, the development of targeted management strategies for survivors, and future comparative research globally helping to identify biomarkers that may predict LTO.

Indexed as

Drug Resistant EpilepsyStatus EpilepticusHumansOutcome Assessment, Health CareQuality of LifeTreatment OutcomeepilepsyFIRESneuropsychologicalNORSEpsychiatricquality of life

Identifiers

PMID39825688
PMCPMC11997932

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.