Funding required to establish ESKD registry, hears INS meeting

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 (INS) Annual Scientific Meeting 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 outlined.

“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.

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.

However, funding and a team of three staff is required to further develop the registry. It is hoped this resourcing will be secured in 2027, Prof Stack said.

Speaking at the INS meeting, Prof Joe Eustace, Clinical Director of the HSE National Renal Office and Consultant Nephrologist, Cork University Hospital, remarked that the “one-off initiative” illustrated what could be done. He stressed that while there is no ongoing funding for a registry, currently, “this overall initiative is absolutely critical,” he said.