Botteri E, Iodice S, Maisonneuve P, Alfieri M, Burzoni N, Manghi L, Martinetti M, Montanari B, Albertazzi E, Bazolli B, Rotmensz N
Division of Epidemiology and Biostatistics, European Institute of Oncology, via Ripamonti 435, Milan, Italy.
Ecancermedicalscience. 2009;3:149. doi: 10.3332/ecancer.2009.149. Epub 2009 Oct 21.
An institutional and centralized hospital-based tumour registry (TR) is the ideal supporting tool for the organization and management of clinical data in a comprehensive cancer centre. The purpose of this paper is to describe the development of the TR at the European Institute of Oncology (IEO), Milan, Italy, from its origin to its current applications.
After a series of meetings with members of administrative, clinical, research and informatics departments, the TR was activated in March 2006 with the aim of collecting data on all the individuals referred to the institute, with or at risk of developing a tumour. It was implemented on an Oracle™-based interface. A minimum dataset of variables was defined and data collection was divided into four forms, which together gather all the relevant data on patients, tumours, treatments and subsequent events.
After a six-month pilot period, which involved the training of the tumour registrars, adjustments to the structure of the registry, development of a data quality control procedure and finalization of the operative protocol, since September 2006 the data collection has been fully operative. Five registrars have been chronologically entering data of all individuals who visited the IEO for the first time since 1 January 2000. As of March 2009, data on 69,637 individuals and 43,567 tumours has been reviewed, recoded and registered in the TR. Twenty-two per cent of the tumours (n=9578) were first invasive primaries, diagnosed and treated in the IEO; the most common sites were breast (n=4972), lung (n=627), intestines (n=479) and prostate (n=376).
The IEO TR has been proven functional and reliable in monitoring the activity of the hospital, allowing extraction of data from any subpopulation with characteristics of interest. The structured and centralized TR represents an important tool for our research-oriented institution.
基于医院的机构化集中式肿瘤登记处（TR）是综合癌症中心临床数据组织和管理的理想支持工具。本文旨在描述意大利米兰欧洲肿瘤研究所（IEO）的TR从起源到当前应用的发展情况。
在与行政、临床、研究和信息学部门的成员进行一系列会议之后，TR于2006年3月启动，目的是收集所有转诊至该研究所的、患有或有患肿瘤风险的个体的数据。它是在基于Oracle™的界面上实施的。定义了一个最小变量数据集，数据收集分为四种表格，共同收集患者、肿瘤、治疗及后续事件的所有相关数据。
经过为期六个月的试点期，包括对肿瘤登记员的培训、对登记处结构的调整、数据质量控制程序的开发以及操作方案的最终确定，自2006年9月以来数据收集已全面开展。五名登记员按时间顺序录入了自2000年1月1日以来首次到访IEO的所有个体的数据。截至2009年3月，TR中已审查、重新编码并登记了69637名个体和43567个肿瘤的数据。22%的肿瘤（n = 9578）是首次侵袭性原发性肿瘤，在IEO被诊断和治疗；最常见的部位是乳腺（n = 4972）、肺（n = 627）、肠道（n = 479）和前列腺（n = 376）。
IEO的TR已被证明在监测医院活动方面功能正常且可靠，能够从任何具有感兴趣特征的亚群体中提取数据。结构化和集中式的TR是我们这个以研究为导向的机构的重要工具。
