New questionnaires aim to measure the emotional toll of visible tumors in NF1
NCT ID NCT06880991
First seen Nov 01, 2025 · Last updated May 15, 2026 · Updated 25 times
Summary
This study is testing two questionnaires to see if they can capture how people with neurofibromatosis type 1 (NF1) feel about the appearance of their tumors. About 110 participants — including children, adults, and caregivers — will join focus groups or interviews to share their thoughts on the questionnaires. The goal is to develop better tools for measuring tumor visibility and appearance concerns in future NF1 clinical trials.
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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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
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