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New study aims to better measure pain in NF1 patients

NCT ID NCT02544022

Recruiting now Knowledge-focused Sponsor: National Cancer Institute (NCI) Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jul 17, 2026 · Updated 5 times

Summary

This study works to improve questionnaires that measure pain, daily activities, and physical function for people with neurofibromatosis type 1 (NF1) who have plexiform neurofibromas. Participants aged 5 and older will give feedback on existing surveys through group discussions or interviews. The goal is to create better tools for future clinical trials and patient care.

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Conditions

The condition(s) this trial relates to.

neurofibromatosis type 1 plexiform neurofibroma

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

NEUROFIBROMATOSIS 1 PLEXIFORM NEUROFIBROMAS

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

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