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Using the NF Registry in Research: Video

For Researchers: Using the NF Registry in Research

The NF Registry represents the collaborative efforts of patients from around the world diagnosed with NF, including neurofibromatosis type 1 (NF1) and all forms of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2. The database was created to accelerate research and therapy development for patients affected by NF. The database houses the information necessary to determine the prevalence and natural history of the disorders as well as to assist in the identification of appropriate candidate patients for a particular study, all of whom have agreed to be contacted by CTF about potential beneficial research. Identifiable information for registry participants will never be released by CTF. For centers conducting clinical trials, participants who may be candidates for studies will be contacted by CTF and provided with contact information; if the patient is interested in potential participation in a study, he or she will contact the study center.

For all requests, please contact Kate Kelts at

For Patients: Join and Update the NF Registry

We urge all patients living with all types of neurofibromatosis or schwannomatosis to join the NF Registry and ask all participants to update their NF Registry profiles each May. Joining the NF Registry is the best way to join the Foundatin’s efforts to Make NF Research Visible.

Sign up today at