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Cardiomyopathies are a heterogeneous group of disorders characterised by structural and functional abnormalities of the myocardium. Individually, these disorders are relatively uncommon, but collectively they have an estimated prevalence within the European population of 3 per 1000 individuals. All cardiomyopathies cause premature death from arrhythmia and progressive heart failure and represent a substantial burden to the healthcare services of all European nations.
The aim of the EORP registry is to collect previously unobtainable data on the epidemiology and outcomes of patients seen across a range of centres in Europe in order to improve clinical service provision and therapy. To date, most information about the presentation and natural history of individual disorders comes from cohort studies in a few centres in Europe and the United States.
In addition to data collected on the major types of cardiomyopathies, the Long-Term phase will also observe patients with myocarditis, an inflammatory disease of the heart in which there is histological evidence of inflammatory infiltrates within the myocardium associated with myocyte degeneration and necrosis of non-ischaemic origin.
Finally, following consultation with the ESC Working Group on Myocardial and Pericardial Disease and the Association for European Paediatric and Congenital Cardiology Working Group on Genetics and Basic Science (AEPC WG), the protocol allows enrolment of paediatric and young patients.
The European Society of Cardiology (ESC) Cardiomyopathy & Myocarditis Registry is an international prospective, multicentre, observational study of patients presenting to referral centres in European countries and beyond. Data collection is prospective, consecutive and with both in and out patients.
In the Long-Term registry, the selection criteria for centres have been modified since the pilot phase to facilitate capture of data from fewer specialist centres, but there is a still an emphasis on caseload and the consecutive nature of data collection.The pilot was conducted in 12 countries, with 1149 patients enrolled over a 12-month period during 2012-2013, with a one-year follow-up. The main results of the pilot were presented during the ESC Congress in Barcelona in 2014 and the one-year follow-up data will be presented during the ESC Congress 2015 in London.
The Executive Committee of the registry is chaired by Professor Philippe Charron (representative of the Myocardial and Pericardial Disease Working Group).
Philippe Charron (Chairman)Perry Elliott Luigi TavazziJuan GimenoAldo MaggioniPhilippe CharronMichal TenderaJuan Pablo Kaski
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Our mission: To reduce the burden of cardiovascular disease
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