Sign Up for the Neurofibromatosis Registry
NF Midwest has partnered with CTF to promote the NF Registry
The NF Registry is a database where anyone who has Neurofibromatosis (NF) Type 1, Neurofibromatosis Type 2, or schwannomatosis can register their contact information and include how NF or schwannomatosis affects them. This information will then be used to determine who may be eligible for clinical trials or other research studies. It will also help researchers learn more about the different characteristics of NF and how various people are affected.
Your information will be kept private and you can choose whether or not to be contacted if you are ever eligible for a trial or study. At that time, you may discuss the study with your doctor and decide if you want to contact the researchers.You always have the right to refuse. No one is given your information. You directly provide it to the researchers yourself if you choose to do so.
The NF Registry is VITAL to move forward NF research and care. It needs YOU to participate
With your participation clinicians and researchers will be able to…
- Match you and others to new clinical trials (new potential treatments) for NF
- Provide patients with facts and figures about the NF community as a whole
- Learn how NF changes over a person’s lifetime
- Help researchers understand what makes one person’s symptoms different from another’s
- Better inform qualified NF researchers from all over the world about issues people with NF care about most
The NF Registry Gives Back to You Immediately
Once you register you will have access to de-identified data that has been collected from other registrants so that you can see how others are affected by NF.