Race against time: global trial tests drugs for deadly seizure storm

NCT ID NCT07281027

Summary

This study aims to determine which of two existing immune-modulating drugs—anakinra or tocilizumab—works better for treating NORSE, a rare and devastating condition where previously healthy people develop continuous seizures that don't respond to standard treatments. The trial will enroll 438 patients across 33 hospitals worldwide, randomly assigning some to receive one drug or the other within the first week of illness, while following others who receive treatment later. Researchers will track recovery, disability levels, and survival over one year to identify the most effective treatment approach.

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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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Barrow Institute

    Phoenix, Arizona, 85013, United States

    Contact Email: •••••@•••••

  • Baylor/Texas Children's

    Houston, Texas, 77030, United States

    Contact Email: •••••@•••••

  • Beth Israel Deaconess

    Boston, Massachusetts, 02215, United States

    Contact Email: •••••@•••••

  • Boston Children's Hospital

    Boston, Massachusetts, 02215, United States

    Contact Email: •••••@•••••

  • Children's Hospital Colorado

    Aurora, Colorado, 80045, United States

    Contact Email: •••••@•••••

  • Children's Hospital Philadelphia (CHOP)

    Philadelphia, Pennsylvania, 19104, United States

    Contact Email: •••••@•••••

  • Children's National (DC)

    Washington D.C., District of Columbia, 20010, United States

    Contact Email: •••••@•••••

  • Cleveland Clinic

    Cleveland, Ohio, 44195, United States

    Contact Email: •••••@•••••

  • Columbia University

    New York, New York, 10027, United States

    Contact Email: •••••@•••••

  • Great Ormond Street Hospital

    London, United Kingdom

    Contact Email: •••••@•••••

  • Hospital for Sick Children

    Toronto, Canada

    Contact Email: •••••@•••••

  • Karolinska Institute

    Stockholm, Sweden

    Contact Email: •••••@•••••

  • King's College

    London, United Kingdom

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  • Mass General (MGH)

    Boston, Massachusetts, 02114, United States

    Contact Email: •••••@•••••

  • Mayo Clinic

    Rochester, Minnesota, 55905, United States

    Contact Email: •••••@•••••

  • Medical College of Wisconsin

    Milwaukee, Wisconsin, 53226, United States

    Contact Email: •••••@•••••

  • Mount Sinai (NY)

    New York, New York, 10029, United States

    Contact Email: •••••@•••••

  • New York University

    New York, New York, 10012, United States

    Contact Email: •••••@•••••

  • Northwestern University

    Evanston, Illinois, 60208, United States

    Contact Email: •••••@•••••

  • Oregon Health and Science University

    Portland, Oregon, 97239, United States

    Contact Email: •••••@•••••

  • Salpêtrière

    Paris, France

    Contact Email: •••••@•••••

  • Seattle Children's Hospital

    Seattle, Washington, 98105, United States

    Contact Email: •••••@•••••

  • Seoul National University Hospital

    Seoul, South Korea

    Contact Email: •••••@•••••

  • UT Southwestern Medical Center

    Dallas, Texas, 75390, United States

    Contact Email: •••••@•••••

  • University of Chicago

    Chicago, Illinois, 60637, United States

    Contact Email: •••••@•••••

  • University of Cincinnati

    Cincinnati, Ohio, 45221, United States

    Contact Email: •••••@•••••

  • University of Florida

    Gainesville, Florida, 32611, United States

    Contact Email: •••••@•••••

  • University of Modena

    Modena, Italy

    Contact Email: •••••@•••••

  • University of Nebraska

    Lincoln, Nebraska, 68588, United States

    Contact Email: •••••@•••••

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

    Contact Email: •••••@•••••

  • University of Wisconsin

    Madison, Wisconsin, 53706, United States

    Contact Email: •••••@•••••

  • Western University

    London, Canada

    Contact Email: •••••@•••••

  • Yale New Haven Hospital

    New Haven, Connecticut, 06520, United States

    Contact Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.