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.
At a Glance
- Age
- 5 – 120
- Sex
- Any
- Study type
- Observational
- Participants needed
- 110 (estimated)
- Sponsor
- National Cancer Institute (NCI) · NIH
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:
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
Loading…
Loading trial locations…
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