Researchers track menkes disease over time to unlock key insights
NCT ID NCT04337684
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study gathers long-term health information from up to 50 people with Menkes disease, a rare genetic disorder. The goal is to track survival and nervous system changes over time. No new treatments are being tested; instead, researchers are collecting data to better understand the disease's natural course.
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the original study
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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.
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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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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Sentynl Therapeutics
Solana Beach, California, 92117, United States