Washington University Neurofibromatosis Registry
Patient Registry Initiative (NPRI)


The Neurofibromatosis Type 1 (NF1) Registry is a 30-minute questionnaire that will collect information to help doctors and researchers better understand the range of medical and social problems experienced by children and adults with NF1. If you have been diagnosed with NF1 or are the parent/guardian of a child (minor) with NF1, you are eligible to join this registry. The Washington University NF Center has employed state-of-the-art methods to protect your information, including storing all data on secure computer servers and obtaining a Certificate of Confidentiality from the National Institutes of Health (NIH). The information gained from your participation may one day help doctors develop personalized treatments that improve the quality of life for individuals living with NF1.

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