20-Year study tests precision medicine for rare Brain-Skin disorders
NCT ID NCT07327164
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This completed study looked at 1,200 people with neurocutaneous syndromes (NF1, TSC, SWS, VHL) in Western China. Researchers compared those who received genetic testing, targeted drugs, and coordinated specialist care against those who got standard care. The goal was to see if precision medicine could improve survival, control seizures, shrink tumors, and lower costs. Since this is an observational study, it does not test a new treatment but gathers information to guide future care.
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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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West China Hospital of Sichuan University
Chengdu, Sichuan, China
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