Focus on rare disease treatments to beat kidney failure, says study


Focusing on rare conditions could significantly reduce the burden of kidney disease, according to a new study led by University College London (UCL) and the UK Kidney Association.

The study, published in The Lancet to mark World Kidney Day on 14 March, draws on the largest rare kidney disease dataset ever created.

It found that patients with rare kidney diseases are 28 times more likely to experience kidney failure than those with chronic kidney disease (CKD), but are less than half as likely to die before kidney failure treatment is needed.

The results suggest that additional focus on treating rare kidney diseases, many of which have new therapies in development or already available, could disproportionately alleviate the overall demand for expensive and hazardous dialysis and kidney transplantation treatments.

Rare kidney diseases are a group of conditions that each affect fewer than one in 2,000 people. Though each disease might be rare on its own, collectively their impact is significant. Rare kidney diseases account for 5-10% of people with CKD, but they constitute over a quarter of those receiving dialysis or with a kidney transplant globally.

A golden opportunity to treat rare diseases

The UK’s National Registry of Rare Kidney Diseases (RaDaR) was set up in 2010 and now includes over 25,000 patients with rare kidney diseases recruited from 108 UK hospitals.

Professor Danny Gale, senior author of the study from UCL Division of Medicine and Director of RaDaR, said: “This study underscores the importance of recognising the pivotal role rare kidney diseases play in the overall burden of kidney failure. I hope that this will be a call to arms to show how important rare kidney diseases are and the many potential benefits of focusing on these conditions. Treatments for many of these diseases are either available or in development, so I think we now have a golden opportunity to substantially reduce the burden, both for patients and the NHS, of kidney failure.”

Diana Spencer, Senior Digital Content Editor, DDW

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