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 and beyond. Data collection is prospective, consecutive and with both in and out patients.
- 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.
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 Alida Caforio.
Alida Caforio (Chairperson)
Juan Pablo Kaski