New study tracks Long-Term safety of rare disease treatment

NCT ID NCT04632953

First seen Nov 01, 2025 · Last updated May 12, 2026 · Updated 26 times

Summary

This study follows 150 people with long-chain fatty acid oxidation disorders (LC-FAOD) to monitor the long-term safety of the drug triheptanoin. Researchers will track serious side effects, pregnancy outcomes, and infant health. The goal is to understand how well the treatment works over time and ensure it remains safe for patients.

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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

  • Ann & Robert H. Lurie Children's Hospital

    Chicago, Illinois, 60611, United States

  • Boston Children's Hospital

    Boston, Massachusetts, 02215, United States

  • CHEO (Children's Hospital Eastern Ontario)

    Ottawa, Ontario, K1H 8L1, Canada

  • Children's Hospital of Colorado

    Aurora, Colorado, 80045, United States

  • Children's Hospital of Pittsburgh of UPMC

    Pittsburgh, Pennsylvania, 15224, United States

  • Columbia University

    New York, New York, 10032, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43205, United States

  • Phoenix Children's Hospital

    Phoenix, Arizona, 85016, United States

  • Seattle Children's Hospital

    Seattle, Washington, 98020, United States

  • SickKids (The Hospital for Sick Children)

    Toronto, Ontario, M5G 1X8, Canada

  • The Emory Clinic

    Atlanta, Georgia, 30322, United States

  • University of Alberta

    Edmonton, Alberta, T6G 1C9, Canada

  • University of California San Francisco

    San Francisco, California, 94158, United States

  • University of Minnesota

    Minneapolis, Minnesota, 55454, United States

  • University of South Florida

    Tampa, Florida, 33606, United States

  • University of Utah

    Salt Lake City, Utah, 84108, United States

Conditions

Explore the condition pages connected to this study.