The Washington University in St. Louis (Missouri, USA) is currently establishing a Neurofibromatosis Type 1 (NF1) Registry. NF1 patients or parent/guardian of a child with NF1 are eligible to join the registry. Registry questionnaire is going to collect information, that would help doctors and researchers better understand the range of medical and social problems, experienced by children and adults with NF1. Registry organisers have employed state-of-the-art methods to protect participants’ information, including storing all data on secure computer servers and obtaining a Certificate of Confidentiality from the National Institutes of Health (NIH). NF1 patients may access the study here. The information gained from your participation may one day help doctors develop personalised treatments that improve the quality of life for individuals living with NF1.
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