Testing and validating pain and symptom questionnaires for NF1
Part of Brain & nervous system, Cancer, Genetic & congenital clinical trials.
This study checks whether patient surveys (questionnaires) can reliably measure symptoms and pain in people with NF1 who have plexiform neurofibromas. It helps create better tools for tracking how you feel and how treatments may affect quality of life.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have NF1 confirmed by official clinical criteria or a known NF1 gene change
- You have at least one plexiform neurofibroma that is at least 3 cm (or 3 mL on MRI)
- You meet the age rule: 5+ for the first part, or 8+ for the second part
- You (or your parent/guardian for younger participants) can understand and read English and be able to sign forms
- Depending on the part of the study: either you report pNF pain recently, or you report no pNF pain recently
- You should not have started new pNF treatment or pain treatment in the last 3 months, and not have joined a MEK-inhibitor trial in the last 12 months
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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