国内甲状腺癌专病数据库单中心及多中心建设的探索及初步应用

Exploration and preliminary application of single center and multi-center special disease database construction for thyroid cancer in China

甲状腺癌是最常见的内分泌系统恶性肿瘤。国内在甲状腺癌诊疗过程中缺乏系统性收集和整理标准化临床数据, 缺乏高级别的诊断准确性、治疗有效性、并发症发生率等相关的临床研究, 因此建立甲状腺癌专病数据库是一条必经之路。甲状腺癌单病种数据库需要保证数据的结构化、完整性、准确性及时效性。单中心甲状腺癌专病数据库的建设是多中心数据库建设的基础。通过基于区块链技术联盟协作开展多中心临床研究, 建立全国首个多中心、一体化、规范化的甲状腺癌专病数据库。多中心甲状腺癌专病数据库的建立难度主要在于数据标准及数据上传格式的统一, 需要有统一的监督管理组织及数据共享合作模式。

Thyroid cancer is the most common malignant tumor of the endocrine system.In the process of thyroid cancer diagnosis and treatment in China,there is a lack of systematic collection and collation of standardized clinical data,as well as a lack of high-level clinical studies related to diagnostic accuracy,treatment effectiveness and complication rate.Therefore,the establishment of a thyroid cancer specific disease database is a necessary way.The data structure,integrity,accuracy and timeliness of thyroid cancer single disease database should be guaranted.The construction of single-center thyroid cancer specific disease database is the foundation of multi-center database construction.Through the collaboration of multi-center clinical research based on blockchain technology alliance,the country′s first multi-center,integrated and standardized thyroid cancer characteristic disease database had been established.The difficulty of establishing multi-center thyroid cancer specific disease database mainly lies in the unification of data standards and data uploading format,which requires unified supervision,management organization and data sharing and cooperation mode.