New study tracks Long-Term safety of rare disease treatment
NCT ID NCT04632953
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows 150 people with long-chain fatty acid oxidation disorders (LC-FAOD) to check the long-term safety of their treatment, including for pregnant women and their babies. Researchers track serious side effects and disease complications. The goal is to better understand how the medication triheptanoin works over time.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Locations
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Ann & Robert H. Lurie Children's Hospital
Chicago, Illinois, 60611, United States
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Boston Children's Hospital
Boston, Massachusetts, 02215, United States
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CHEO (Children's Hospital Eastern Ontario)
Ottawa, Ontario, K1H 8L1, Canada
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Children's Hospital of Colorado
Aurora, Colorado, 80045, United States
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Children's Hospital of Pittsburgh of UPMC
Pittsburgh, Pennsylvania, 15224, United States
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Columbia University
New York, New York, 10032, United States
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Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
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Phoenix Children's Hospital
Phoenix, Arizona, 85016, United States
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Seattle Children's Hospital
Seattle, Washington, 98020, United States
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SickKids (The Hospital for Sick Children)
Toronto, Ontario, M5G 1X8, Canada
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The Emory Clinic
Atlanta, Georgia, 30322, United States
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University of Alberta
Edmonton, Alberta, T6G 1C9, Canada
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University of California San Francisco
San Francisco, California, 94158, United States
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University of Minnesota
Minneapolis, Minnesota, 55454, United States
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University of South Florida
Tampa, Florida, 33606, United States
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University of Utah
Salt Lake City, Utah, 84108, United States
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