20-Year study reveals hope for rare disease patients in western china
NCT ID NCT07327164
First seen Jan 11, 2026 · Last updated May 24, 2026 · Updated 19 times
Summary
This study looked at 1,200 people with neurocutaneous syndromes (NF1, TSC, SWS, VHL) in Western China over 20 years. Researchers compared those who received genetic testing, targeted drugs, and coordinated care to those who got standard care. The goal was to see if precision medicine could improve survival, control seizures, shrink tumors, and lower costs.
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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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Contacts and locations
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Locations
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West China Hospital of Sichuan University
Chengdu, Sichuan, China
Conditions
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