Mavroudis Constantine, Gevitz Melanie, Elliott Martin J, Jacobs Jeffrey P, Gold Jeffrey P
Division of Cardiovascular-Thoracic Surgery, Children's Memorial Hospital, Chicago, IL 60614, USA.
Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2002;5:126-31. doi: 10.1053/pcsu.2002.31504.
The rationale for a congenital heart surgery database lies in the organized manner in which information can be compiled to accomplish programmatic evaluation, monitor clinical outcomes, comply with governmental requirements, perform retrospective and prospective clinical studies, and participate in local, national, and global improvement strategies. The task of inaugurating an effective congenital heart surgery database has taken many years and involved concurrent development efforts at multiple sites. Two such efforts took place in North America with the Society of Thoracic Surgeons Congenital Heart Surgery Database, and in Europe with the European Congenital Heart Defects Database. These initial efforts provided the impetus for development of an international congenital heart surgery database that would allow scientific exchanges on an international scale and promote multi-institutional evaluation of congenital heart surgery. Sample outcome templates from the Society of Thoracic Surgeons and the European Association for Cardio-thoracic Surgery's accepted minimum database data set are reviewed for the specific diagnostic entry ventricular septal defect, to familiarize the reader with potential available data summaries and outcome analyses, including risk stratification, when data harvest is performed. In Europe, the agreed upon minimum data set are now collected as part of the Pediatric European Cardiac Surgical Registry, while in North America users of the CardioAccess database and users of the minimum data set downloaded from the Society of Thoracic Surgeons web site are being notified of plans for a 2002 data harvest incorporating the minimum database data set. It is likely that the extant voluntary, minimal data set congenital heart surgery database will be replaced by a mandated system required by states, provinces, and countries. Data collection schemes and data validation programs will become standardized, which will result in improved data quality and uniform congenital heart center participation. As participation with valid data approaches 100% of congenital heart centers, the power and importance of the database increases exponentially. Reliable information can be used to assess residency/fellowship programs, resource allocation, major therapeutic trends, manpower issues, and in the end, all initiatives that will require accurate information.
先天性心脏病手术数据库的基本原理在于，能够以有组织的方式汇编信息，以完成项目评估、监测临床结果、符合政府要求、开展回顾性和前瞻性临床研究，以及参与地方、国家和全球的改进策略。建立一个有效的先天性心脏病手术数据库的任务耗时多年，涉及多个地点的同步开发工作。在北美，胸外科医师协会先天性心脏病手术数据库开展了两项这样的工作；在欧洲，欧洲先天性心脏病缺陷数据库也进行了类似工作。这些初步努力推动了国际先天性心脏病手术数据库的发展，该数据库将允许在国际范围内进行科学交流，并促进对先天性心脏病手术的多机构评估。本文回顾了胸外科医师协会和欧洲心胸外科学会认可的最小数据库数据集的样本结果模板中针对特定诊断条目室间隔缺损的内容，以使读者熟悉在进行数据收集时可能获得的数据总结和结果分析，包括风险分层。在欧洲，商定的最小数据集现已作为儿科欧洲心脏外科注册的一部分进行收集，而在北美，已通知CardioAccess数据库的用户以及从胸外科医师协会网站下载最小数据集的用户有关2002年纳入最小数据库数据集的数据收集计划。现有的自愿性、最小数据集先天性心脏病手术数据库很可能会被国家、省和地区要求的强制性系统所取代。数据收集方案和数据验证程序将实现标准化，这将提高数据质量并使先天性心脏病中心的参与更加统一。随着有效数据的参与率接近先天性心脏病中心的100%，数据库的影响力和重要性将呈指数级增长。可靠的信息可用于评估住院医师/专科医师培训项目、资源分配、主要治疗趋势、人力问题，最终用于所有需要准确信息的举措。
