Letter Summary from Children’s Tumor Foundation
Driven by the NF patient community, Children’s Tumor Foundation (CTF), with guidance from its Clinical Care Advisory Board (CCAB), developed a Designation System to assist families in identifying potential clinics that might meet specific patient needs. Based on other rare disease clinic designation models, CTF and the CCAB established this process with additional input from NF Clinic Network (NFCN) members and CTF patient representatives.
Annual report submissions were reviewed using objective criteria based on data provided by each clinic. Designation was based on the following criteria: clinical care, collaboration or support of NF research, education of patients and providers, and community involvement. Based on the Washington University NF Center data, the NF clinic has been designated as a Comprehensive NF Center for both NF1 and Schwannomatosis (SWN) care.
