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将先天性心脏病外科和介入心脏病学的结果数据合并到一个单一的数据库中:欧洲先天性心脏病外科医生协会 (ECHSA) 和欧洲儿科和先天性心脏病协会 (AEPC) 的以患者为中心的合作的发展。

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC).

机构信息

Congenital Heart Center, Division of Cardiovascular Surgery, Departments of Surgery and Pediatrics, University of Florida, Gainesville, FL, United States of America.

Department of Paediatric Cardiology, Sophia Children's Hospital, Rotterdam, The Netherlands.

出版信息

Cardiol Young. 2023 Jul;33(7):1043-1059. doi: 10.1017/S1047951123001427. Epub 2023 Aug 22.

Abstract

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new , as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the . The new will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

摘要

欧洲先天性心脏病外科医生协会(ECHSA)先天性数据库(CD)是世界上第二大儿科和先天性心脏外科临床数据库,也是欧洲最大的数据库,欧洲还有各种较小的国家或地区数据库。尽管近年来介入心脏病学治疗程序大幅增加,但欧洲只有零星的国家或地区数据库记录此类程序。最重要的是,目前世界上没有一个先天性心脏数据库能够在国际层面上无缝结合心脏外科和介入心脏病学数据;因此,无法轻易跟踪、评估和分析在同一或相似患者身上进行的心脏外科和介入心脏病学手术的结果。为了填补我们在收集和分析我们共同患者信息方面的这一重要空白,ECHSA 和欧洲儿科和先天性心脏病协会(AEPC)已联手合作,利用一个旨在收集介入心脏病学程序数据的新模块扩展 ECHSA-CD。本文旨在描述新概念、结构和功能,以及患者手术和介入治疗结果的联合分析带来的潜在有价值的协同作用。新模块将允许中心从其自身中心获得可靠的心脏外科和经导管治疗结果数据,以及用于基准测试的可靠的国家和国际汇总结果数据。每个参与的中心或部门都将可以访问自己的数据,以及该数据库的汇总数据。新模块将允许心脏病学中心获得汇总心脏病学数据,就像心脏外科中心已经可以获得汇总心脏病学数据一样。心脏外科和导管介入治疗结果的比较可能会加强决策过程。对数据库中收集的大量信息进行研究也有可能有助于提高欧洲和世界各地接受心脏外科和介入心脏病学治疗的儿科和/或先天性心脏病患者的早期和晚期生存率以及生活质量。

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