Decade-Long watch: tracking a rare Disease's impact on families
NCT ID NCT04632953
Summary
This study aims to collect long-term safety and health information from up to 150 children and adults with a rare metabolic disorder called LC-FAOD. It will follow participants for up to 10 years to understand the natural course of the disease and monitor the safety of a specific treatment, triheptanoin, especially during pregnancy and for newborns. The program observes patients under their doctor's care but does not provide the treatment itself.
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
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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
Conditions
Explore the condition pages connected to this study.