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Welcome to the European Society of Cardiology. Our mission: to reduce the burden of cardiovascular disease in Europe
 

Cardiomyopathy and Myocarditis Registry

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.

Study design and methods

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. Data collection is prospective, consecutive and with both in and out patients.

A pilot phase of the registry was conducted in 2012-13. The selection of participating centres in the pilot was determined by caseload and expertise. In the Long-Term registry, the selection criteria for centres have been modified to facilitate capture of data from less specialist centres, but there is a still an emphasis on caseload and the consecutive nature of data collection.

Objectives and characteristics of the study

  • Description of the demographic, clinical and genetic characteristics of patients.
  • Recording current standards for diagnostic workup and clinical follow-up.
  • Description of therapeutic approaches currently employed.
  • Reporting Long-Term outcomes including the long term benefits and complications of therapeutic interventions.
  • Determine the proportion of patients with potentially inheritable heart muscle disorders that are offered genetic counselling and testing as well as the genetic profile and genotype/phenotype correlations of patients with identified genetic mutations.
  • Prospectively evaluate recently proposed criteria for clinically suspected myocarditis.

Study Organisation

The Executive Committee of the registry is chaired by Professor Perry Elliott, (UCL, London).

To see the members of the Executive and Steering Committees, click here.

Back to EORP introduction