Funding sought to establish renal registry

Efforts are underway to secure funding to establish a national end-stage kidney disease (ESKD) registry to help improve outcomes for kidney disease patients in Ireland.

Prof Austin Stack, Consultant Nephrologist, University Hospital Limerick, provided an update on work undertaken to develop the registry at the recent Irish Nephrology Society Winter Meeting 2026 in Cork.

In a joint presentation alongside Dr Conor Judge, Consultant Nephrologist, University of Galway, Prof Stack underlined the importance of a registry for patients.

“Chronic kidney disease is common, harmful, and associated with a substantial morbidity and mortality and reduced life expectancy,” Prof Stack said.

“We know internationally that health systems that have an embedded registry and data system have better patient outcomes than those who do not, so we need data systems to plan, organise, monitor, and improve the lives of patients with kidney disease.”

Prof Stack outlined that following the introduction of the kidney disease clinical patient management system, known as eMed, HSE Spark Innovation Programme seed funding was provided in 2024 for a proof-of-concept project using eMed as a source of information for a registry.

An ESKD data system working group was established. This group is part of an overarching group called the chronic disease data system programme working group, through which the HSE has committed to introducing a chronic disease data system in which the initial focus will be on kidney disease and diabetes.

Prof Stack noted that the ESKD group’s purpose was “to develop a proposal and proof-of-concept for a registry or data system of patients initially focusing on patients with kidney failure requiring renal replacement therapy” in Ireland.

The group undertook an audit of in-centre haemodialysis (HD) care, which took place last year, and included in-centre HD patients alive on HD as of 31 December 2024, patients on HD treatment for over 90 days, and those on dialysis three times a week.

The audit found that 2,046 patients were on HD, the mean age of patients was 68 years, and patients were predominantly male. One in five patients had diabetes and one in six had glomerular disease.

The size of renal units nationally varied, the audit highlighted. Beaumont Hospital, Dublin, had the largest number of HD patients, while Letterkenny University Hospital had the lowest.

To further develop, the registry requires a team of three staff and greater funding, Prof Stack said. He said it is hoped this resourcing will be secured in 2027.

Prof Joe Eustace, Clinical Director of the National Renal Office and Professor of Medicine and Consultant Nephrologist, Cork University Hospital, and Director of the Clinical Research Facility, Cork, chaired the session.

“This overall initiative is absolutely critical,” he said, echoing the views of many expressed at the meeting on the importance of a registry for patient outcomes.