• General surveys designed to assess the management of cardiovascular diseases of major impact in terms of incidence. These will provide epidemiological data and reports on the application of clinical practice guidelines. They include heart failure, atrial fibrillation and chronic ischaemic heart disease. The two latter studies are now in preparation, and the heart failure pilot study is now completed, which paves the way for a long-term study.
• Sentinel registries which assess the impact of interventional procedures and imaging techniques and include pilot registries in ablation for atrial fibrillation (whose initial results have been reported at this congress) and transcatheter valve implantation.
• Special surveys/registries to assess the epidemiology and management of rarer conditions as emerging issues in public health, with rapid evaluation in terms of cost, severity, and clinical need - and include registries in pregnancy and cardiac disease, and cardiomyopathies.
• Prevention surveys to assess the epidemiology of CVD risk factors and prevention measures, which from 2012 will include EuroAspire IV.
“All of these registries should be up and running by 2012,” said Tavazzi, “and we expect the data to be reliable and representative of practice in Europe.” Geographical representation, he added, is important, to provide a clear overview of all European regions.
Yesterday, at a symposium of the EurObservational programme, Dr Aldo Maggioni from the ANMCO study centre in Italy reported results from the completed pilot study for the heart failure general registry. This was a prospective survey conducted in 136 cardiology centres (with more than 5000 patients) in 12 European countries selected to represent the different healthcare systems and attitudes across Europe.
Results showed that, while a mortality rate of 7% (after one-year follow-up) in chronic HF seems an improvement, outcomes in those admitted for acute HF are “still unacceptably unfavourable”, said Maggioni, with an all-cause mortality rate of nearly 17%.
The study also showed that guideline-recommended treatments in chronic HF were not only prescribed appropriately but were maintained over the whole follow-up period. However, those admitted for acute HF were still treated in a more “anecdotal” way.
Today, a webcast symposium will preview the upcoming registries of the EurObservational project, including the general registries in IHD and atrial fibrillation, and the sentinal registry on transcutaneous valve treatment.
And yesterday, Professor Jolien Roos-Hesselink also reported that the special registry on pregnancy in cardiac disease, an area in which evidence from prospective or randomised studies is sparse, analysed its first interim data in June.
More than 1300 women have been enrolled so far - from 28 countries and 60 centres - around 60% of whom had congenital heart disease (though there were also 333 with valvular disease, 79 with cardiomyopathies and 24 with ischaemic heart disease).
Importantly, said Roos-Hesselink, 26% of the women were hospitalised for cardiac reasons during their pregnancies, and the Caesarean section rate for delivery was high (40%). In addition, the rate of maternal mortality (13 deaths in total) was 100-times higher than in the general population, and fetal mortality at least ten times higher.
This is an important study, said Roos-Hesselink, not least because the complications in these patients are frequent and can be life-threatening. Indeed, in Europe maternal heart disease has now become the major cause of maternal death during pregnancy.