Improving Pain Questionnaires for Neurofibromatosis 1

Development and Validation of Patient Reported Outcome (PRO) Measures for Individuals With Neurofibromatosis 1 (NF1) and Plexiform Neurofibromas (pNFs)

Recruiting Observational Study
Neurofibromatosis 1 Plexiform Neurofibromas
No Placebo Group Every participant receives an active treatment — no one gets a placebo. Healthy Volunteers Welcome You do not need to have the condition being studied to take part. No Study Drug Researchers observe your health over time — no experimental treatment is given.
Ready to participate?

Review the details below, then apply to join this clinical trial.

At a Glance
Age
5 and older
Sex
Any
Study type
Observational
Participants needed
476 (estimated)
Sponsor
National Cancer Institute (NCI) · NIH
Who this trial is looking for

This trial is looking for people aged 5 and older with neurofibromatosis 1 and plexiform neurofibromas. Participants will discuss their experiences with pain and fill out new questionnaires to help improve pain assessment tools.

Are You a Good Fit for This Trial?

You may be able to join if

  • I am at least 5 years old.
  • I have neurofibromatosis 1.
  • I have at least one plexiform neurofibroma.
  • I can speak and understand English.
  • I am willing to sign a consent form.
  • I have experienced pain related to my plexiform neurofibroma.
  • I have been diagnosed by a doctor.

You may not be able to join if

  • I have severe cognitive or behavioral impairments.
  • I am currently enrolled in another clinical trial for my plexiform neurofibroma.
  • I have started a new pain treatment in the last 3 months.
  • I have been on a MEK inhibitor trial in the last 12 months.

Summarized in plain language from this trial's official eligibility criteria. The full criteria are further down this page — only the research team can confirm whether you qualify.

Think this trial could be right for you?

Answer a few quick questions to see if you may meet the eligibility requirements.

Check Your Eligibility
About This Trial
Background: People with neurofibromatosis 1 (NF1) who have plexiform neurofibromas (pNFs) can have pain that affects their daily lives. This study aims to improve questionnaires that measure their pain, daily living, and physical functioning. Objectives: To examine and improve questionnaires about daily living for people with NF1 and pNFs. Eligibility: People ages 5 and older with NF1 and a p…
Trial Locations
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Eligibility Criteria
* SUBJECT INCLUSION CRITERIA: * Documented NF1 either by NIH clinical criteria or molecularly-proven mutation in the NF1 gene, PER the Neurofibromatosis Diagnostic Criteria AND \>=1 plexiform neurofibroma in any location that is either symptomatic or asymptomatic, and is defined by the following: …
Contacts

Pamela L Wolters, Ph.D.

(240) 760-6035

woltersp@mail.nih.gov

CONTACT