NF Registry

The NF Registry collects disease-specific natural history data on individuals with NF to improve understanding of NF and inform treatment development for all types of NF, including neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN). Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the NF Registry data for a research project, please contact our registry administrator at nfregistry@ctf.org for more information. Access to NF Registry data is contingent upon project approval by the NF Registry Advisory Board.