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.

Disclaimer Read more

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for NEUROFIBROMATOSIS TYPE 1 are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.