Developing consensus on an Irish Renal Registry for research: a multi-stakeholder event

Chronic kidney disease (CKD) is common in Ireland – with a recent study showing 1 in 7 people over 50 years old have the condition – and is associated with significant social and economic burden. Despite this, Ireland has no patient registry for kidney disease. A registry is simply a computer database that collects clinical information and health outcomes for a group of patients to help improve the quality of care. We already collect lots of information to support the care of people with kidney disease and transforming this into a functioning registry, the Irish Renal Registry, has the potential to improve service delivery, support service planning and enable audit and research. It is also in-line with ongoing plans within the European Union to create common rules and governance for healthcare data. There is growing support from the Irish Kidney community and the HSE to plan for a renal registry with sustainable governance and management that best delivers on the potential.

Development of an Irish Renal Registry enabling research is fundamental to two of the six objectives of the HRB’s Strategy 2021-2025 ((3) use of data for research and (5) enhance European collaboration), to the Irish Kidney Association Strategic Plan 2021-25 (supporting patient centred research) and recommendations from the Health Information and Quality Authority (HIQA) and the Health Research Charities around the use of healthcare data in research.

This conference brings together the HSE National Renal Office, the Irish Nephrology Society, Irish Universities, the Irish Kidney Association, eHealth Ireland and the HSE National Health Intelligence Unit to develop a shared vision of the key considerations in the development of the Irish Renal Registry to enable research. This will be captured in a report to the HSE to support ongoing work in this area and in a publication in HRB Open.