Development of Patient-Reported Outcome Measures Assessing Tumor Visibility and Appearance Concerns in Neurofibromatosis Type 1: A Qualitative Study

Recruiting Observational Study
Neurofibromatosis Type 1 Neurofibroma
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Age
5 – 120
Sex
Any
Study type
Observational
Participants needed
110 (estimated)
Sponsor
National Cancer Institute (NCI) · NIH
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About This Trial
Background: Neurofibromatosis 1 (NF1) is a disease that causes tumors to grow along the nerves. These include plexiform neurofibromas (pNF) and cutaneous neurofibromas (cNF). Both pNF and cNF can be visible to other people. These tumors can affect a person s appearance and quality of life. Researchers want to be able to assess changes in appearance before and after treatment for NF1 tumors. Obje…
Trial Locations
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Eligibility Criteria
* INCLUSION CRITERIA: * Participants must self-report a diagnosis of NF1 OR be the caregiver of a child with NF1 (5-17 years old with plexiform neurofibroma \[pNF\] or 12-17 years old with cutaneous neurofibroma \[cNF\]) The following for the participant or the caregiver of a child, as appropriate:…
Contacts

Staci M Peron, Ph.D.

(240) 760-6025

martins@mail.nih.gov

CONTACT