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Creating Better Tools to Measure Pain in Neurofibromatosis Patients

Plain-English translation of NCT02544022 on ClinicalTrials.gov ↗ · Source last updated October 2026 · Translation generated August 2026 · How we translate trials

What is this trial?

This research study is creating and testing new questionnaires and pain scales specifically designed for people with neurofibromatosis type 1 (NF1) and plexiform neurofibromas (tumors that grow along nerves). Right now, doctors don't have good tools to measure how much pain these tumors cause or how they affect daily life. This study asks patients and parents to answer questions about pain and functioning so researchers can develop better measurement tools that future clinical trials can use.

People with neurofibromatosis often experience significant pain and loss of quality of life from their tumors, but current pain measurement tools weren't designed specifically for this condition. The FDA wants researchers to use better patient-focused measurements in future NF1 treatment trials, so this study is building those tools from the ground up by listening to actual patients.

Do you qualify?

You likely qualify if…

you have been diagnosed with neurofibromatosis type 1 (confirmed by genetic testing or clinical criteria)
you have at least one plexiform neurofibroma that is 3 centimeters or larger in size
you are at least 8 years old (or a parent/guardian of a child aged 8–17 in Phase 2)
you are able to read, speak, and understand English
you are willing to sign a consent form showing you understand the study

You likely don't qualify if…

you have severe cognitive or behavioral problems that would make it hard to participate in the study
you enrolled in a different clinical trial to treat your plexiform tumor within the past 12 months
you started a new pain medication or pain treatment (like physical therapy) within the past 3 months
you are unable to read, speak, or understand English

What participation looks like

In Phase 1 (which is complete), patients and parents attended focus groups to discuss existing pain scales. In Phase 2, which is now enrolling, you would complete questionnaires about your pain, how it affects your daily activities, and your quality of life. Some participants have pain and some don't, as the researchers want to understand both groups. The study involves filling out surveys and possibly some discussion with the research team, but no medication or invasive procedures.

Creating Better Tools to Measure Pain in Neurofibromatosis Patients

What is this trial?

Do you qualify?

What participation looks like

Trial locations(6 sites)