Organization: Washington University Neurofibromatosis (NF) Center
Submitted by: Kimberly Johnson
The Washington University Neurofibromatosis Center has launched a unique internet-based NF1 Registry (NF1 Patient Registry Initiative) that collects information from individuals with NF1 from around the world to help physicians and researchers better understand complications of living with NF1 in both children and adults. We hope that these studies will ultimately inform personalized treatment strategies that will improve the quality of life for individuals living with NF1.
To sign up for the registry, go to https://nf1registry.wustl.edu/ All information is housed on a secure server in compliance with established HIPAA guidelines.
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