Sophia Antipolis, Monday 4 March 2013: Budgets are becoming tighter and health systems are under pressure to address the increasing burden of chronic diseases. Tackling chronic diseases requires up to date information on disease prevalence and risk factors but Europe currently lacks data on cardiovascular disease (CVD) that is standardised and can be compared.
The European Society of Cardiology (ESC) is therefore creating a task force on CVD data standardisation so that data from different registries can be compared. The ESC will also collaborate with the PAtient REgistries iNiTiative (PARENT) Joint Action (1) to create an inventory of registries - this will help the cardiology community find existing data and avoid duplication.
The moves follow a meeting of cardiology organisations and experts initiated by the ESC in Brussels, Belgium, to discuss the need for coordination and standardisation of CVD data in Europe (2).
The ESC task force on CVD data standardisation will build on Cardiology Audit and Registration Data Standards (CARDS). ESC experts were instrumental in CARDS, which was an initiative of the Irish Ministry of Health & Children and co-funded by the European Union (EU) in 2004. CARDS aimed to standardise the definitions used in the collection of CVD data, and resulted in three data sets for three sub-specialties of cardiology: percutaneous coronary intervention, clinical electrophysiology and acute coronary syndromes.
Professor Frans Van de Werf (Leuven, Belgium), who was the instigator of the Brussels workshop, said: “CARDS is nearly 10 years old and should be updated. We need to get more countries and studies involved in implementing it so that everyone can benefit from standardised, comparable data on cardiovascular disease.”Professor Van de Werf said: “The inventory of registries will provide a single entry point for health professionals, researchers and policy makers looking for real life data on cardiovascular diseases. It will also avoid duplication of data collection in Europe. Countries will be able to use country-level data from European registries, rather than establishing their own registry. This will save valuable time and money.”
(1) Joint Actions are projects carried out by the European Union (EU) and one or more Member States or by the EU and the competent authorities of other countries participating in the health programme.The PARENT Joint Action was established to support cross-border use of patient registry data for public health and research purposes including health technology assessment, pricing, and vigilance and safety. It brings support to EU member states for the development and governance of patient registries.
(2) The meeting was attended by:British Heart Foundation Health Promotion Research Group (BHFHPRG), University of Oxford (UK)European Commission, DG SANCO (Belgium)European Heart Network (Belgium)European Organisation for Research & Treatment of Cancer (Belgium)European Organisation for Research and Treatment of Cancer (EORTC) (Belgium)European Society of Cardiology (France)National Institute for Health & Welfare (Finland)National Institute of Public Health (Slovenia)Organisation for Economic Co-operation and Development (OECD)Universities of Ghent and Brussels (Belgium)
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