NF1 Patient Registry Initiative
Go directly to the NF1 Patient Registry Initiative website.
The Washington University NF1 Patient Registry Initiative (NPRI) is a unique internet-based database that collects medical information to help physicians and researchers better understand the spectrum of medical problems found in children and adults with NF1.
All individuals with a diagnosis of NF1 are eligible to complete the 30-minute online questionnaire.
The information collected from the NPRI will be used to better characterize the relationships between specific problems in NF1.
In particular, researchers hope to better understand correlations between NF1 and cancer, heart problems, allergies, depression and learning disabilities.
The NPRI will enable studies that aim to identify children at greatest risk for specific medical problems in NF1. The information gained from these studies may help clinicians to develop personalized treatment strategies that improve the quality of life for individuals living with NF1.
Health information is stored on the NF1 Patient Registry Initiative using secure servers at the Washington University School of Medicine to protect families who participate. In addition, yearly email reminders will be sent to participants to allow them to update their information.
You can access the registry by simply clicking here or on the lower-left gold box titled NF1 Registry on this website’s home page.