Making Connections for NF1: Online international NF1 patient registry
It can be challenging to gather information from enough people for neurofibromatosis type 1 research. Having a large number of participants is critical because it allows researchers to see patterns in the data that could help them determine why some individuals with NF1 develop severe complications while others do not. The Washington University NF Center NF1 Patient Registry Initiative (NPRI) was developed to support NF1 research and to one day help doctors develop better treatments for individuals with NF1.
The NPRI is a unique internet-based registry open to all adults and children living with NF1 anywhere in the world. If you have NF1 or are a parent/legal guardian of someone with NF1, you can join the registry at https://nf1registry.wustl.edu. Registry participation involves completing a questionnaire that collects information on medical, psychological, and social challenges experienced by children and adults with NF1. Of note is that the objective of the NPRI is specifically to determine underlying reasons for variability in disease severity between individuals with NF1. We hope that this information can be used to develop personalized approaches to disease management and risk prediction. Comparatively, the CTF NF Registry is geared toward matching individuals with NF1, NF2, and schwannomatosis to clinical trials. Be a part of this important research effort and join the NF1 Patient Registry Initiative today!