Jacobs Marshall Lewis, Jacobs Jeffrey Phillip, Franklin Rodney C G, Mavroudis Constantine, Lacour-Gayet Francois, Tchervenkov Christo I, Walters Hal, Bacha Emile A, Clarke David Robinson, William Gaynor J, Spray Thomas L, Stellin Giovanni, Ebels Tjark, Maruszewski Bohdan, Tobota Zdzislaw, Kurosawa Hiromi, Elliott Martin
Drexel University College of Medicine, Philadelphia, Pennsylvania 19073, USA.
Cardiol Young. 2008 Dec;18 Suppl 2:101-15. doi: 10.1017/S1047951108002813.
This review includes a brief discussion, from the perspective of cardiac surgeons, of the rationale for creation and maintenance of multi-institutional databases of outcomes of congenital heart surgery, together with a history of the evolution of such databases, a description of the current state of the art, and a discussion of areas for improvement and future expansion of the concept. Five fundamental areas are reviewed: nomenclature, mechanism of data collection and storage, mechanisms for the evaluation and comparison of the complexity of operations and stratification of risk, mechanisms to ensure the completeness and accuracy of the data, and mechanisms for expansion of the current capabilities of databases to include comparison and sharing of data between medical subspecialties. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiac surgery the Congenital Database of The European Association for Cardio-Thoracic Surgery, the Congenital Database of The Society of Thoracic Surgeons, the Pediatric Cardiac Care Consortium, and the Central Cardiac Audit Database in the United Kingdom. Potential means of approaching the ultimate goal of acquisition of long-term follow-up data, and input of this data over the life of the patient, are also considered.
本综述从心脏外科医生的角度，简要讨论了建立和维护先天性心脏手术多机构结局数据库的基本原理，以及此类数据库的发展历程、当前技术水平描述，还讨论了改进领域和该概念未来的扩展方向。回顾了五个基本领域：命名法、数据收集和存储机制、手术复杂性评估与比较及风险分层机制、确保数据完整性和准确性的机制，以及扩展数据库当前功能以纳入医学亚专业之间数据比较和共享的机制。本综述简要介绍了欧洲和北美的几项与小儿及先天性心脏手术数据库相关的计划，即欧洲心胸外科学会先天性数据库、胸外科医师学会先天性数据库、小儿心脏护理联盟，以及英国的中央心脏审计数据库。还考虑了实现获取长期随访数据这一最终目标的潜在方法，以及在患者的整个生命周期内输入此类数据的方法。
