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Cutaneous Neurofibromas Group

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 & Kavita Sarin, MD



Resources (click to download)

Adult cNF Survey: Patient Attitude and Beliefs Regarding Cutaneous Neurofibromas and Treatment

  • This survey is used to assess the perspective of adults with Neurofibromatosis Type 1 regarding cutaneous neurofibromas for designing clinical trials. The results of this anonymous survey will be published in an upcoming Neurology supplement of REiNS manuscripts.¬†

Last updated by Wolters, Pam (NIH/NCI) [E] on Nov 03, 2020