Decade-Long quest to map the journey of a complex genetic disorder
NCT ID NCT00924196
Summary
This study aims to understand how Neurofibromatosis Type 1 (NF1) changes over many years in children and adults. Researchers will follow about 260 participants for up to 10 years, performing regular check-ups, scans, and tests to track tumors, pain, and quality of life. The goal is to gather detailed information to help design better future treatments, not to test a new therapy.
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Contacts and locations
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Locations
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National Institutes of Health Clinical Center
Bethesda, Maryland, 20892, United States
Conditions
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