Gut microbiome alterations as a mechanism of immune dysregulation in new-onset refractory status epilepticus (NORSE)

Brief description of study

The purpose of this study is to learn more about and compare the role of gut dysfunction in cases of new-onset refractory status epilepticus (NORSE), febrile infection-related epilepsy syndrome (FIRES), or status epilepticus of known cause by studying stomach bacteria. Status epilepticus is what we call it when seizures occur one after another without stopping. The term “refractory” is used to describe the condition because it does not get any better with medicine, making it hard to treat. In this case, the condition is called “new-onset” refractory status epilepticus (NORSE) since the condition is new and the cause is unknown. FIRES is a subcategory of NORSE that involves a fever prior to the start of status epilepticus.


Clinical Study Identifier: s20-00525
Principal Investigator: Claude Steriade.


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