New hope for children with rare brain disease: drug safety tracked over time

NCT ID NCT04476862

First seen Jan 15, 2026 · Last updated May 16, 2026 · Updated 21 times

Summary

This study follows 35 children with CLN2 disease, a rare and severe brain disorder, who are receiving cerliponase alfa. Researchers are monitoring long-term safety, including allergic reactions and device problems. The goal is to ensure the treatment remains safe over time.

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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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Contacts and locations

Locations

  • Advent Health

    Orlando, Florida, 32803, United States

  • Arkansas Children's Hospital

    Little Rock, Arkansas, 72205, United States

  • Boston Children's Hospital,

    Boston, Massachusetts, 02115, United States

  • Children's Healthcare of Atlanta

    Atlanta, Georgia, 30329, United States

  • Children's Hospital Minnesota

    Minneapolis, Minnesota, 55404, United States

  • Children's Hospital of Colorado

    Aurora, Colorado, 80045, United States

  • Children's Hospital of Orange County

    Orange, California, 92868, United States

  • Children's National Hospital

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

  • Mt. Sinai School of Medicine

    New York, New York, 10029, United States

  • NYU Langone Medical Center

    New York, New York, 10017, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43130, United States

  • Rush University Medical Center

    Chicago, Illinois, 60612, United States

  • Seattle Children's Hospital

    Seattle, Washington, 98145-5005, United States

  • Texas Children's Hospital

    Houston, Texas, 77030, United States

  • University of Oklahoma Health Sciences Center

    Oklahoma City, Oklahoma, 73104, United States

  • University of Rochester Medical Center

    Rochester, New York, 14642, United States

Conditions

Explore the condition pages connected to this study.