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new-onset refractory status epilepticus (NORSE) - Clinical Profile, Treatments & Trials | Kisho | Kisho

Rare Disease

new-onset refractory status epilepticus

MONDO:0018199

Also known as:NORSEDe novo cryptogenic refractory multifocal febrile status epilepticus

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Overview

New-onset refractory status epilepticus is an acute encephalopathy with inflammation-mediated status epilepticus characterized by an acute refractory status epilepticus, typically of the tonic-clonic type, following prodromal symptoms of confusion, fever, fatigue, headache, symptoms of gastrointestinal or upper respiratory tract infection, behavioral changes or hallucinations. Brain MRI abnormalities and abnormal findings in CSF, including pleocytosis and/or elevated protein levels, are frequently found during acute episode. Treatment-resistant epilepsy, cognitive and psychiatric impairments are usual consequences.

Treatments5 FDA approved

Clinical Trials1 registered

Diagnosis

Biomarker and diagnostic research for new-onset refractory status epilepticus has been reported in the published literature.

Treatment

Compiled from FDA-approved drug records, orphan drug designations, and FDA Adverse Event Reporting System (FAERS) safety data. GeneReviews management guidance is included where available.

4 FDA-approved treatments are available for new-onset refractory status epilepticus, including seizalam (SEIZALAM, approved 2018), MIDAZOLAM INJECTION, 10 MG (N/A, approved 2022), and LORAZEPAM (LORAZEPAM, approved 1980). An additional 4 compounds hold orphan drug designation.

Approved Therapies

Brand Name	Generic Name	Mechanism	Approved

Prognosis

Estimated prevalence: Unknown (Unknown prevalence).

Research Landscape

Sourced from ClinicalTrials.gov and PubMed. Publication types are classified using NLM-curated article metadata; research type breakdowns reflect the nature of published work for this disease.

1 clinical trial registered. Interventions under study include drug therapy and other interventions. Pipeline includes 1 PHASE3. Research is primarily sponsored by academic and government institutions.

131 publications have been identified in PubMed for new-onset refractory status epilepticus. Research spans Case Report / Case Series (34%), Review / Meta-Analysis (22%), and Epidemiology / Natural History (14%).

Research Type	Count	% of Total
Patient case studies	43

Data assembled from 5 of 12 sources · Last updated Sep 18, 2026, 3:17 PM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

Orphanet

European rare disease database

Orphanet:363558

GARD

Genetic and Rare Diseases Info Center

GARD:12244

Questions for Your Care Team

→What are the benefits and potential side effects of SEIZALAM for managing new-onset refractory status epilepticus?
→Are any of the 1 active clinical trial a good fit for my situation?
→Are there specialists or centers of excellence for this condition in my area?
→Is there a patient registry I should consider joining?

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Brand Name	Generic Name	Sponsor	Designated	Exclusivity End	Designation Status
phenobarbital sodium	phenobarbital sodium	Accord Healthcare Inc.	2020	—	Designated
1-(2-chlorophenyl)-1-(S)-hydroxy-2-(S)-carbamoyloxy-propane	1-(2-chlorophenyl)-1-(S)-hydroxy-2-(S)-carbamoyloxy-propane	Bio-Pharm Solutions Co., Ltd.	2016	—	Designated
ganaxolone	ganaxolone	Marinus Pharmaceuticals, Inc.	2016	—	Designated
allopregnanolone	allopregnanolone	Sage Therapeutics	2014	—	Designated

Kisho

new-onset refractory status epilepticus

Overview

Diagnosis

Treatment

Approved Therapies

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Questions for Your Care Team

Questions for Your Care Team

Orphan Drug Designations

Clinical Trials

Recent Publications

Latest News & Developments

Potentially Surgical Digestive Complications in Patients With Status Epilepticus: Insights From the ICTAL Registry.

new-onset refractory status epilepticus

Overview

Diagnosis

Treatment

Approved Therapies

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Orphan Drug Designations

Clinical Trials

Recent Publications

Latest News & Developments

Potentially Surgical Digestive Complications in Patients With Status Epilepticus: Insights From the ICTAL Registry.