Giusti Francesco, Martos Carmen, Trama Annalisa, Bettio Manola, Sanvisens Arantza, Audisio Riccardo, Arndt Volker, Francisci Silvia, Dochez Carine, Ribes Josepa, Fernández Laura Pareja, Gavin Anna, Gatta Gemma, Marcos-Gragera Rafael, Lievens Yolande, Allemani Claudia, De Angelis Roberta, Visser Otto, Van Eycken Liesbet
European Commission, Joint Research Centre (JRC), Ispra, Italy.
Belgian Cancer Registry, Brussels, Belgium.
Front Oncol. 2023 Feb 8;13:1109978. doi: 10.3389/fonc.2023.1109978. eCollection 2023.
Population-based cancer registries are responsible for collecting incidence and survival data on all reportable neoplasms within a defined geographical area. During the last decades, the role of cancer registries has evolved beyond monitoring epidemiological indicators, as they are expanding their activities to studies on cancer aetiology, prevention, and quality of care. This expansion relies also on the collection of additional clinical data, such as stage at diagnosis and cancer treatment. While the collection of data on stage, according to international reference classification, is consolidated almost everywhere, data collection on treatment is still very heterogeneous in Europe. This article combines data from a literature review and conference proceedings together with data from 125 European cancer registries contributing to the 2015 ENCR-JRC data call to provide an overview of the status of using and reporting treatment data in population-based cancer registries. The literature review shows that there is an increase in published data on cancer treatment by population-based cancer registries over the years. In addition, the review indicates that treatment data are most often collected for breast cancer, the most frequent cancer in women in Europe, followed by colorectal, prostate and lung cancers, which are also more common. Treatment data are increasingly being reported by cancer registries, though further improvements are required to ensure their complete and harmonised collection. Sufficient financial and human resources are needed to collect and analyse treatment data. Clear registration guidelines are to be made available to increase the availability of real-world treatment data in a harmonised way across Europe.
基于人群的癌症登记机构负责收集特定地理区域内所有可报告肿瘤的发病率和生存数据。在过去几十年中，癌症登记机构的作用已超越监测流行病学指标，因为它们正在将活动扩展到癌症病因学、预防和护理质量研究。这种扩展还依赖于收集额外的临床数据，如诊断时的分期和癌症治疗情况。虽然根据国际参考分类收集分期数据在各地几乎都已得到巩固，但欧洲各国在治疗数据收集方面仍存在很大差异。本文结合了文献综述和会议记录中的数据，以及来自125个欧洲癌症登记机构的数据（这些数据是为2015年欧洲癌症登记网络 - 欧盟委员会联合研究中心数据征集活动提供的），以概述基于人群的癌症登记机构在使用和报告治疗数据方面的现状。文献综述表明，多年来基于人群的癌症登记机构发表的癌症治疗数据有所增加。此外，综述指出，治疗数据最常收集的是乳腺癌（欧洲女性中最常见的癌症），其次是结直肠癌、前列腺癌和肺癌，这些癌症也较为常见。癌症登记机构越来越多地报告治疗数据，不过仍需进一步改进以确保数据的完整和统一收集。收集和分析治疗数据需要足够的财政和人力资源。需要制定明确的登记指南，以在全欧洲以统一的方式增加真实世界治疗数据的可获取性。
