20年磨一剑记北京积水潭医院骨与软组织肿瘤数据库的建立

.专论Special article.

20 年磨一剑

——记北京积水潭医院骨与软组织肿瘤数据库的建立

牛晓辉　李远　徐海荣

DOI: 10.3969/j.issn.2095-252X.2015.09.002 中图分类号：R738.1

作者单位：100035　北京积水潭医院骨肿瘤科

Establishment process of bone and soft tissue database of Beijing Jishuitan Hospital: nearly 20 years experience NIU Xiao-hui, LI Yuan, XU Hai-rong. Department of Orthopedic Oncology Surgery, Beijing Jishuitan Hospital, 100035, PRC

【Abstract】 Cancer database is dedicated to understand the cancer incidence, the treatment and the prognosis.

Eventually, the data are to develop and improve cancer prevention and control strategies for the government. Due to the low incidence of bone and soft tissue tumors, the diagnosis and treatment have always been difficult. To establish

a database of bone tumor is much more difficult than to establish a general cancer database, such as lung cancer,

breast cancer database. Department of orthopedic oncology surgery ( Beijing Jishuitan Hospital ) is one of the earliest professional centers in China exclusively treating bone and soft tissue tumors. The setup of this database generally reflects the establishment of the basic profile of the bone and soft tissue tumor database of China. Current papers describe the basic development of database of tumors at home and abroad, and introduce the currently widely used hospital information system. And its main features are illustrated as well. The database of Beijing Jishuitan Hospital can be traced back to 1977. It has gone through the paper registration, stand-alone and network version of the development process. The basic characteristics can be summarized as follows: secure, stable, scalable, easy to maintain, advanced, standardized, easy to use, real-time inquiry, independent / share. Lastly, prospect of its development is introduced including the establishment of well-functioning mechanisms that regulate construction standards, setting up of data-sharing platform for the development progress of a series of data applications, data collection methods, and personnel training aspects. It is worth noting that we are inviting all national experts focusing on bone and soft tissue tumors to use this database for free.

【Key words】 Bone tumors; Soft tissue tumors; Database

【关键词】　骨肿瘤；软组织肿瘤；数据库

骨与软组织肿瘤属于肿瘤学的范畴。当前针对肿瘤的研究，不管是基础还是临床，都强调循证医学的重要性，循证医学的根本是完整可靠的数据记录，而数据记录的集合就是数据库。就临床而言，肿瘤学数据库可分为两种：一种是以流行病学研究为主要目的肿瘤登记数据库，另一种以临床、科研为目的，研究疾病本身特点及治疗疗效的专业单 ( 或 ) 多病种数据库。目前各医院尽管都有自己的病历管理系统，但当前的医院病历系统很难涵盖临床和科研需要的全部参数，另外也不能随时更新以满足多中心临床研究为目的的参数。这种专业单 ( 或 ) 多病种数据库，针对的是某一 ( 类 ) 特定疾病，涉及患者的一般资料、诊断治疗、随访记录和预后情况等，涵盖疾病的发病、治疗、转归等过程。骨与软组织肿瘤相对是少见疾病，但在北京积水潭医院这样的专科医院，拥有全国乃至世界上最大的病例数量，其病例的广度和深度是综合医院难以比拟的，所以建立一个这样的数据库是极为迫切的。笔者以北京积水潭医院骨与软组织肿瘤数据库的建立为契机，阐述国内外骨与软组织肿瘤的发展状况和方向。

一、骨与软组织肿瘤数据库的现状

( 一 ) 国外肿瘤数据库情况

为了便于医学科学数据资源的检索、交换、共享，国外以肿瘤登记制度为基础，已经建立了许多大型数