Department of Medical Oncology, IRCCS Fondazione Istituto Nazionale Tumori, Via G. Venezian 1, 20133, Milan, Italy.
Evaluative Epidemiology Unit, IRCCS Fondazione Istituto Nazionale Tumori, Via G. Venezian 1, 20133, Milan, Italy.
Eur J Surg Oncol. 2019 Jan;45(1):16-18. doi: 10.1016/j.ejso.2018.03.030. Epub 2018 Apr 12.
Rare cancers represent approximately one fourth of all cancers. Despite being a heterogeneous group of diseases, they share similar problems including lack of expertise, issues in quality of care, discrepancies in outcome and limitations in research. Traditionally, centralization of rare cancer patients to dedicated reference centres has been recommended to ensure expertise, multidisciplinarity and access to innovation. However, centralization entails health migration, rationing of resources and a potential failure in routine care. By ensuring appropriate care to all patients regardless the point of access, networking seems the most appropriate answer to the problem of rare cancers. The launch of the Joint Action on Rare Cancers as well as the recent establishment of the European Reference Networks represent for the first time a concrete opportunity to make networking a reality and ultimately reduce disparities and improve outcome in these diseases.
罕见癌症约占所有癌症的四分之一。尽管它们是一组异质性疾病，但它们存在一些共同的问题，包括缺乏专业知识、护理质量问题、结果差异和研究限制。传统上，建议将罕见癌症患者集中到专门的参考中心，以确保专业知识、多学科性和获得创新。然而，集中化带来了医疗迁移、资源分配不均以及常规护理可能失败的问题。通过确保所有患者无论就诊地点如何都能得到适当的护理，网络似乎是解决罕见癌症问题的最合适的答案。罕见癌症联合行动的启动以及最近欧洲参考网络的建立，首次为网络的实现提供了一个具体的机会，并最终减少这些疾病的差异，改善结果。
