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.
At a Glance
- Age
- 5 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 476 (estimated)
- Sponsor
- National Cancer Institute (NCI) · NIH
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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