Cutaneous neurofibromas (cNF) are benign peripheral nerve sheath tumors and a hallmark feature of NF1. While cNFs do not undergo malignant transformation, disfigurement and associated pruritus may significantly impact quality of life. There is no effective medical therapy for cNFs, and the current management is limited to surgical removal of the lesions amenable to surgery. Substantial progress has been made in the understanding of the biology of neurofibromas, which may allow for the acceleration of the development of effective therapies. Goals of the cNF working group will include the identification of research priorities for cNFs and the development of recommendations for endpoints, designs, and outcome measures for clinical trials directed at cNFs.
Current group Leaders: Ashley Cannon, PhD, MS, CGC & Dominique Pichard, MD
Adult cNF Survey: Patient Attitude and Beliefs Regarding Cutaneous Neurofibromas and Treatment