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The European Registry for Patients with Mechanical Circulatory Support (EUROMACS): first annual report
Theo M M H de By1, Paul Mohacsi2, Jan Gummert3
1Euromacs e.V. c/o Deutsches Herzzentrum Berlin, Berlin, Germany theodeby@euromacs.org paul.mohacsi@insel.ch.
Insights
The European Registry for Patients with Mechanical Circulatory Support (EUROMACS) collects data to improve care for heart failure patients receiving ventricular assist devices or total artificial hearts. It fosters research and collaboration, offering anonymized data for scientific studies.
Area of Science:
- Cardiology
- Medical Engineering
- Public Health
Background:
- Established in 2009, EUROMACS is a key European registry for mechanical circulatory support (MCS).
- It was founded by international experts to advance care for end-stage heart failure patients.
- The registry focuses on ventricular assist devices (VADs) and total artificial hearts (TAHs).
Purpose of the Study:
- To promote scientific research and improve patient care in mechanical circulatory support.
- To establish and maintain a comprehensive registry of device implantation and long-term follow-up data.
- To facilitate anonymized data access for research groups and foster collaboration.
Main Methods:
- Utilizes a software tool provided by Dendrite Clinical Systems Ltd for daily data input and analysis.
- Collects device implantation data and long-term patient follow-up information.
- Anonymizes patient and center data to enable secure access for research.
Main Results:
- EUROMACS has experienced rapid growth in institutional and individual membership.
- The registry facilitates data availability and significance, enhancing scientific contributions.
- An alliance with the European Association for Cardiothoracic Surgeons began in 2012 to optimize data use.
Conclusions:
- EUROMACS is the leading European registry for mechanical circulatory support.
- The registry plays a vital role in advancing scientific understanding and improving patient outcomes.
- Continued collaboration and data utilization are key to its ongoing success.
Abstract:
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.
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