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New study aims to measure the emotional toll of NF1 tumors

NCT ID NCT06880991

First seen Nov 01, 2025 · Last updated May 20, 2026 · Updated 27 times

Summary

This study is for people with neurofibromatosis type 1 (NF1) who have visible tumors, and for caregivers of children with NF1. Researchers want to see if two questionnaires can better capture how these tumors affect appearance and quality of life. Participants will join focus groups or interviews to share their experiences and give feedback on the questionnaires. The goal is to create better tools for future 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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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.