Race to stop the storm: which drug can halt deadly seizures in NORSE?
NCT ID NCT07281027
First seen Jan 04, 2026 · Last updated Jun 02, 2026 · Updated 20 times
Summary
This study tests whether two existing medications, anakinra and tocilizumab, can improve outcomes for people with a rare brain condition called NORSE, which causes continuous seizures that don't respond to standard treatments. About 438 children and adults across 33 hospitals will be randomly assigned to receive one of the two drugs within the first week of illness, and their recovery will be tracked for one year. The goal is to find out which drug works better and whether early treatment leads to better recovery.
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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Study contacts
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Contact
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Locations
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Barrow Institute
Phoenix, Arizona, 85013, United States
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Baylor/Texas Children's
Houston, Texas, 77030, United States
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Beth Israel Deaconess
Boston, Massachusetts, 02215, United States
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Boston Children's Hospital
Boston, Massachusetts, 02215, United States
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Children's Hospital Colorado
Aurora, Colorado, 80045, United States
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Children's Hospital Philadelphia (CHOP)
Philadelphia, Pennsylvania, 19104, United States
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Children's National (DC)
Washington D.C., District of Columbia, 20010, United States
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Cleveland Clinic
Cleveland, Ohio, 44195, United States
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Columbia University
New York, New York, 10027, United States
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Great Ormond Street Hospital
London, United Kingdom
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Hospital for Sick Children
Toronto, Canada
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Karolinska Institute
Stockholm, Sweden
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King's College
London, United Kingdom
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Mass General (MGH)
Boston, Massachusetts, 02114, United States
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Mayo Clinic
Rochester, Minnesota, 55905, United States
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Medical College of Wisconsin
Milwaukee, Wisconsin, 53226, United States
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Mount Sinai (NY)
New York, New York, 10029, United States
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New York University
New York, New York, 10012, United States
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Northwestern University
Evanston, Illinois, 60208, United States
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Oregon Health and Science University
Portland, Oregon, 97239, United States
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Salpêtrière
Paris, France
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Seattle Children's Hospital
Seattle, Washington, 98105, United States
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Seoul National University Hospital
Seoul, South Korea
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UT Southwestern Medical Center
Dallas, Texas, 75390, United States
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University of Chicago
Chicago, Illinois, 60637, United States
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University of Cincinnati
Cincinnati, Ohio, 45221, United States
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University of Florida
Gainesville, Florida, 32611, United States
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University of Modena
Modena, Italy
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University of Nebraska
Lincoln, Nebraska, 68588, United States
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University of Pennsylvania
Philadelphia, Pennsylvania, 19104, United States
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University of Wisconsin
Madison, Wisconsin, 53706, United States
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Western University
London, Canada
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Yale New Haven Hospital
New Haven, Connecticut, 06520, United States
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Conditions
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