There are two major registries that are actively collecting information on NF patients: the CTF Patient Registry and the Washington University in St. Louis Patient Registry Initiative.
-Children’s Tumor Foundation (CTF) Patient Registry:
CTF sponsors a Registry for patients with NF1, NF2 and Schwannomatosis that now includes over 7,000 patients. This registry collects information on symptoms and problems of individual patients. When combined, this information helps researchers identify key problems and rare problems that deserve special attention. It also provides registered patients with information about potential clinical trials for some NF related problems. So while joining the Registry helps all NF patients, it can also help the patient who is registering. We encourage everyone to look at the CTF website, read about, and join their NF Registry.
-Washington University in St. Louis Patient Registry Initiative:
Another very valuable patient registry is being collected at the Washington University in St. Louis NF Center. This is for patients with NF1. This NF Center, which sponsors many clinical trials, is collecting information to understand the risks of developing cancer and other health problems in NF1 patients and to develop individualized treatments for those problems. Again, we encourage everyone to read about the Washington University in St. Louis NF1 Patient Registry Initiative (NPRI) and register.