在单一数据库中合并先天性心脏病外科和介入心脏病学结果数据:欧洲先天性心脏病外科医生协会(ECHSA)和欧洲儿童与先天性心脏病协会(AEPC)以患者为中心的合作发展。

IF 1.1 Q4 CARDIAC & CARDIOVASCULAR SYSTEMS World Journal for Pediatric and Congenital Heart Surgery Pub Date : 2023-07-01 DOI:10.1177/21501351231168829
Jeffrey P Jacobs, Thomas Krasemann, Claudia Herbst, Zdzislaw Tobota, Bohdan Maruszewski, Jose Fragata, Tjark Ebels, Vladimiro L Vida, Ilkka Mattila, Andrzej Kansy, Boulos Asfour, Jürgen Hörer, Attilio A Lotto, M Sertaç Çiçek, Petru Liuba, Sven Dittrich, Massimo Chessa, Regina Bökenkamp, Gurleen Sharland, Katarina Hanséus, Nico A Blom, George E Sarris
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引用次数: 0

摘要

欧洲先天性心脏病外科医生协会(ECHSA)先天性数据库(CD)是全球第二大临床儿科和先天性心脏外科数据库,也是欧洲最大的数据库。尽管近年来介入心脏病学手术急剧增加,但欧洲仅有零星的国家或地区性此类手术数据库。最重要的是,世界上还没有一个先天性心脏病数据库能在国际层面上将外科手术和介入心脏病学数据完美地结合在一起;因此,对相同或相似患者进行的外科手术和介入手术的结果无法轻松地进行跟踪、评估和分析。为了填补我们在收集和分析普通患者信息方面的这一重要空白,欧洲儿童与先天性心脏病协会(ECHSA)和欧洲儿童与先天性心脏病协会(AEPC)已开始合作扩展 ECHSA-CD,并设计了一个新模块来捕捉有关介入心脏病学手术的数据。本手稿旨在描述 ECHSA-CD 中新的 AEPC 介入心脏病学部分的概念、结构和功能,以及通过共享患者的介入和手术结果分析可能产生的宝贵协同作用。ECHSA-CD 的新 AEPC 介入心脏病学部分将使各中心能够从自己的中心获得可靠的手术和经导管治疗结果数据,以及可靠的国内和国际综合结果数据,以便制定基准。每个作出贡献的中心或部门都可以访问自己的数据,以及来自 ECHSA-CD 的 AEPC 介入心脏病学部分的汇总数据。ECHSA-CD 的新 AEPC 介入心脏病学部分将允许心脏病学中心访问心脏病学汇总数据,就像外科中心已经可以访问外科汇总数据一样。手术和导管介入治疗结果的比较有可能加强决策过程。对数据库中收集的大量信息进行研究,还可能有助于改善早期和晚期存活率,并提高欧洲和全世界接受手术和介入性心导管治疗的儿童和/或先天性心脏病患者的生活质量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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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).

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 AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD 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 AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD 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.

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