Successful launch of a comprehensive European registry for the cardiomyopathies.

This editorial refers to ‘European Cardiomyopathy Pilot Registry: EURObservational Research Programme of the European Society of Cardiology’[†][1], by P.M. Elliott et al ., on page 164. Cardiomyopathies represent a heterogeneous group of uncommon diseases which are associated with significant morbidity and mortality. Because they are uncommon, multicentre, national and international registries and studies are essential for establishing diagnostic and therapeutic guidelines.1–4 The need for randomized trials is particularly important in this field in which almost all recommendations are based on expert consensus opinion (level of evidence C).5–9 In this issue of the journal, Elliott et al . report the results of the pilot phase of the EURObservational Research Programme (EORP) registry of cardiomyopathies.10 Twenty-seven referral centres from 12 European countries contributed to a shared effort to collect prospectively valuable information on epidemiological, demographic, diagnostic, genetic, and management aspects of the four major types of cardiomyopathies.11–13 Figure 1 In hypertrophic cardiomyopathy (HCM), the proportion with a family history of sudden cardiac death (SCD) and those with an implantable cardioverter defibrillator (ICD) is consistent with the literature. In the dilated cardiomyopathy (DCM) cohort with ∼60% in NYHA class I and II, and only 11% in NYHA class IV, the high rate of ICD implantation (37%), and of a family history of SCD (16%), suggests strong representation of the arrhythmogenic mutations (e.g. lamin A/C); the genetic findings, when published, will be of interest. In arrhythmogenic right ventricular cardiomyopathy (ARVC), the proportion with a family history of SCD reflects the selection bias of an inherited cardiac disease group seeing the families of … [1]: #fn-2