New questionnaires could help NF1 patients voice appearance concerns
NCT ID NCT06880991
First seen Jun 26, 2026 · Last updated Aug 14, 2026 · Updated 8 times
Summary
This study is developing questionnaires to measure how visible tumors in neurofibromatosis type 1 (NF1) affect patients' appearance concerns. About 110 participants, including children, adults, and caregivers, will complete surveys and join focus groups or interviews to give feedback on two new tools. The goal is to create better ways to assess tumor visibility in clinical trials and care.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this could provide doctors with better tools to understand how tumor visibility affects patients' quality of life.
- What could go wrong
- This is an early, small study focused on developing questionnaires, not testing a treatment. The results may not apply to all NF1 patients.
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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
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
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