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!
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I am 39 having NF1 with spontaneous mutation. It was diagnosed in 1995. I was told it is dead disease but sadly isn’t. I have extreme ADHD,Coordination n focus issue. I have slow reflexes. It has effected my life badly. I didn’t want my own biological kids.
Iam a 62 male with nf1. have new tumors behind my right knee, not much they can do about it. because they are so wrap around everything.taking some vicdon for pain but that is all.anyone have any ideas what else I can take for the pain, and any good nf1 dr.in the Seattle, Washington area?Thank-You
We’re so sorry to year about your pain. It is just one of NF1’s frustrating problems. We have an article about NF1 and pain that you can find here https://www.nfmidwest.org/learn-about-nf/nf1/nf1_resources/be-informed-about-pain-in-nf1/. Also, one of the best place to pose questions like this and to get ideas on how to deal with various problems with NF1 is through the NF Networks Inspire board. There are a lot of people sharing on there. You can find it here https://www.inspire.com/groups/neurofibromatosis-network/.
Hello…I am the mother of two children who both have nf1…my son is six my daughter nearly 4..both inherited from their father & his mother..