de By Theo M M H, Mohacsi Paul, Gummert Jan, Bushnaq Hasan, Krabatsch Thomas, Gustafsson Finn, Leprince Pascal, Martinelli Luigi, Meyns Bart, Morshuis Michiel, Netuka Ivan, Potapov Evgenij, Zittermann Armin, Delmo Walter Eva Maria, Hetzer Roland
Euromacs e.V. c/o Deutsches Herzzentrum Berlin, Berlin, Germany
Department of Cardiology, Swiss Cardiovascular Center, University Hospital (Inselspital), Bern, Switzerland.
Eur J Cardiothorac Surg. 2015 May;47(5):770-6; discussion 776-7. doi: 10.1093/ejcts/ezv096. Epub 2015 Mar 27.
The European Registry for Patients with Mechanical Circulatory Support (EUROMACS) was founded on 10 December 2009 with the initiative of Roland Hetzer (Deutsches Herzzentrum Berlin, Berlin, Germany) and Jan Gummert (Herz- und Diabeteszentrum Nordrhein-Westfalen, Bad Oeynhausen, Germany) with 15 other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry of device implantation data and long-term follow-up of patients with mechanical circulatory support. Hence, EUROMACS affiliated itself with Dendrite Clinical Systems Ltd to offer its members a software tool that allows input and analysis of patient clinical data on a daily basis. EUROMACS facilitates further scientific studies by offering research groups access to any available data wherein patients and centres are anonymized. Furthermore, EUROMACS aims to stimulate cooperation with clinical and research institutions and with peer associations involved to further its aims. EUROMACS is the only European-based Registry for Patients with Mechanical Circulatory Support with rapid increase in institutional and individual membership. Because of the expeditious data input, the European Association for Cardiothoracic Surgeons saw the need to optimize the data availability and the significance of the registry to improve care of patients with mechanical circulatory support and its potential contribution to scientific intents; hence, the beginning of their alliance in 2012. This first annual report is designed to provide an overview of EUROMACS' structure, its activities, a first data collection and an insight to its scientific contributions.
欧洲机械循环支持患者注册机构（EUROMACS）于2009年12月10日由罗兰·赫策尔（德国柏林德国心脏中心）和扬·古默特（德国北莱茵-威斯特法伦州巴特奥伊瑙森心脏与糖尿病中心）发起成立，还有其他15个创始国际成员。其目标是推动科学研究，以改善使用心室辅助装置或全人工心脏作为长期机械循环支持的终末期心力衰竭患者的护理。同样，该组织旨在提供并维护一份设备植入数据注册表以及对机械循环支持患者的长期随访。因此，EUROMACS与登德里特临床系统有限公司合作，为其成员提供一种软件工具，允许每日输入和分析患者临床数据。EUROMACS通过为研究小组提供访问任何可用数据的机会来促进进一步的科学研究，其中患者和中心均为匿名。此外，EUROMACS旨在促进与临床和研究机构以及相关同行协会的合作，以推进其目标。EUROMACS是唯一一家总部位于欧洲的机械循环支持患者注册机构，机构和个人成员数量迅速增加。由于数据输入迅速，欧洲心胸外科医师协会认为有必要优化数据可用性以及该注册表对改善机械循环支持患者护理的重要性及其对科学意图的潜在贡献；因此，在2012年开始了它们的联盟。这份第一年度报告旨在概述EUROMACS的结构、其活动、首次数据收集情况以及对其科学贡献的洞察。
