New hope for rare brain disease as Final-Stage drug trial begins

NCT ID NCT05163288

First seen Apr 08, 2026 · Last updated Apr 28, 2026 · Updated 2 times

Summary

This study is testing an investigational drug called N-Acetyl-L-Leucine (IB1001) to see if it can help control symptoms and improve daily function for people with Niemann-Pick disease type C (NPC), a rare and serious genetic disorder. It is a Phase 3 trial, meaning it's in the final stage of testing before potential approval. Participants, who must be at least 4 years old, will take either the study drug or a placebo for periods of time to compare effects on movement, coordination, and quality of life.

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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

Study contacts

  • Contact

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

  • Contact

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

Locations

  • Amsterdam UMC

    RECRUITING

    Amsterdam, 1105, Netherlands

    Contact Email: •••••@•••••

    Contact

  • Comenius University in Bratislva

    ACTIVE_NOT_RECRUITING

    Bratislava, 833 40, Slovakia

  • First Faculty of Medicine, Charles University Hospital Prague

    ACTIVE_NOT_RECRUITING

    Prague, 128 08, Czechia

  • Great Ormond Street Hospital

    ACTIVE_NOT_RECRUITING

    London, WC1N 3JH, United Kingdom

  • Ludwig Maximilian University of Munich

    NOT_YET_RECRUITING

    München, 80539, Germany

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

    Contact

  • Mayo Clinic

    COMPLETED

    Rochester, Minnesota, 55905, United States

  • Royal Free London NHS Foundation Trust

    ACTIVE_NOT_RECRUITING

    London, United Kingdom

  • Royal Manchester Children's Hospital

    ACTIVE_NOT_RECRUITING

    Manchester, M13 9WL, United Kingdom

  • SphinCS - Institute of Clinical Science in Lysosomal Storage Disorders

    ACTIVE_NOT_RECRUITING

    Höchheim, 65239, Germany

  • The Royal Melbourne Hospital

    ACTIVE_NOT_RECRUITING

    Parkville, Victoria, 3050, Australia

  • University Hospital Bern Inselspital

    ACTIVE_NOT_RECRUITING

    Bern, 3010, Switzerland

  • University Hospital Münster

    ACTIVE_NOT_RECRUITING

    Münster, 48149, Germany

  • University of Giessen

    ACTIVE_NOT_RECRUITING

    Giessen, 35389, Germany

  • University of Hamburg

    COMPLETED

    Hamburg, 20246, Germany

Conditions

Explore the condition pages connected to this study.