Better pain surveys for NF1 patients: a step toward smarter clinical trials

NCT ID NCT02544022

First seen Nov 01, 2025 · Last updated May 14, 2026 · Updated 24 times

Summary

This study aims to improve questionnaires that measure pain, daily living, and physical function in people with neurofibromatosis 1 (NF1) who have plexiform neurofibromas (pNFs). Participants aged 5 and older will provide feedback through group discussions or interviews to refine existing pain assessment tools. The goal is to create better, more accurate measures for use in 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

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

    Contact Email: •••••@•••••

  • Children's National Medical Center

    COMPLETED

    Washington D.C., District of Columbia, 20010, United States

  • Cincinnati Children's Hospital and Medical Center Institution

    COMPLETED

    Cincinnati, Ohio, 45229-3039, United States

  • Johns Hopkins University

    ACTIVE_NOT_RECRUITING

    Baltimore, Maryland, 21287, United States

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

    Contact Phone: •••-•••-••••

  • University of Chicago

    ACTIVE_NOT_RECRUITING

    Chicago, Illinois, 60637, United States

Conditions

Explore the condition pages connected to this study.