Plain-English translation of NCT06581146 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is an observational study that tracks liver and gallbladder health in boys under 18 who have been diagnosed with X-linked myotubular myopathy (XLMTM), a rare genetic muscle condition. Researchers have noticed that boys with this condition often develop liver problems, so this study aims to understand how common and serious these problems become over time. Your doctor will continue to manage your care as usual—the study is just collecting information to help improve future treatment.
Boys with this rare muscle condition often have reduced bile flow, which can affect their liver and gallbladder health over time. By tracking these health changes carefully, doctors hope to catch problems early and develop better ways to care for people with this condition.
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You will be followed for about 1 year, with liver and gallbladder check-ups scheduled about every 6 weeks—these can be done at home if you prefer. At the beginning and end of the study, you'll have a special ultrasound scan called a Fibroscan that checks for liver scarring and fatty buildup. Your doctor will continue treating you as normal; the study team is simply collecting this health information to learn more about how the condition affects the liver over time.
AI-generated summary from trial data · Jun 18, 2026 · Not medical advice
United States