International network for sinonasal cancer research (INSICA): a collaborative group to advance research and clinical trials for rare sinonasal malignancies

Abstract Development of evidence-based treatment recommendations for rare cancers is challenging due to limited funding opportunities, spread of small numbers of patients across multiple institutions, and other obstacles. Malignancies of the sinonasal cavity are particularly rare with an overall incidence of approximately 0.56 cases per 100,000 population per year. Additionally, clinical behavior varies with a reported 5-year overall survival rate ranging from 22% - 67%. Here we describe our initial efforts including formation of an international network dedicated to sinonasal cancer research and highlight keys for successful study of rare tumors. This network first began with large multi-institutional retrospective collaborations of rare sinonasal tumors leading to improvements in staging for olfactory neuroblastoma and sinonasal melanoma. These efforts have been followed by a new emphasis on development of collaborative interventional trials as well as the development of position statements and recommendations to guide use of emerging molecularly targeted therapies. In order to be successful in studying rare malignancies, collaboration and teamwork is key along with an unrelenting drive for development of evidence to help guide treatment for rare cancers. This manuscript serves as an outline that may be applied by other interested groups to improve the study of other tumors in the human body.