Dáil Éireann Debate, Wednesday - 25 June 2025
199. Deputy Colm Burke asked the Minister for Health if she will support the development of a national patient registry for pulmonary arterial hypertension in Ireland; and if she will make a statement on the matter. [34703/25]
View answerContinuous patient registries are evidenced to improve quality of care and patient outcomes. As set out in the National Service Plan 2025, the HSE’s National Heart Programme (NHP), in collaboration with the Irish Cardiac Society (ICS) and the Coronary Heart Attack Ireland Register (CHAIR), is developing EuroHeart in Ireland. The European Society of Cardiology (ESC) has developed the EuroHeart registry platform. EuroHeart is an IT infrastructure for continuous online registration of high-quality patient data, with real-time feedback supporting continuous improvement of care and outcomes in patients with cardiovascular diseases. Of further relevance to Ireland, EuroHeart facilitates cost-effective safety surveillance of new drugs and devices as well as registry based randomized controlled trials. The EuroHeart programme has been designed for the benefit of patients, citizens and the planning of healthcare. It addresses Ireland’s need for registry development across the cardiology landscape.
The Future of Registries Taskforce (FoRT) in Ireland recommends disease-specific registries be embedded within national clinical programmes with centralised governance and data standards aligned to international frameworks. EuroHeart provides real-world evidence to inform policy and clinical decision-making. A governance structure for EuroHeart in Ireland has been developed in which a EuroHeart Governance Board, representative of all key national stakeholders, will be responsible for strategy, oversight and decision-making, and formed under the auspices of the (ICS), as required by the ESC.
