20-Year study reveals precision Medicine's promise for rare disorders
NCT ID NCT07327164
First seen Jan 11, 2026 · Last updated May 15, 2026 · Updated 17 times
Summary
This study followed 1,200 people with neurocutaneous syndromes (like NF1, TSC, and Sturge-Weber) over 20 years to see if genetic testing and targeted drugs improve survival, seizure control, and quality of life. Researchers compared those who received precision medicine (genetic testing + targeted drugs + coordinated care) to those who got standard care. The goal was to learn if these approaches work better and cost less in Western China.
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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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Locations
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West China Hospital of Sichuan University
Chengdu, Sichuan, China
Conditions
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