New £10.4 million research centre will unlock new tests, treatments and cures for people living with rare kidney diseases

Thousands of people living with rare kidney disease will have access to improved diagnostics, treatments and potentially cures, thanks to the creation of a new research centre, involving experts from the University of Leicester.

It follows a major report from Kidney Research UK which showed that kidney failure could overwhelm the health care system within ten years.

The LifeArc-Kidney Research UK Centre for Rare Kidney Diseases will provide urgent focus and resource, uniting researchers, patients and healthcare professionals and building on strong established resources, including the national registry of rare kidney diseases (RaDaR), the national renal sample biobank (NURTuRE) and care guidelines. 

It signals the start of a transformation in all 13 of the UK’s children’s kidney centres to embed a culture of research by connecting the systems to accelerate discoveries and advance the treatment of rare kidney diseases.

Medical research charity, LifeArc, has invested £9.4 million into the new translational centre, with a further £1 million contribution from Kidney Research UK to support work over the next five years. 

It will be led by Dr Louise Oni, Senior Lecturer in Paediatric Nephrology at the University of Liverpool and honorary consultant paediatric nephrologist at Alder Hey Children’s Hospital.

Professor Jonathan Barratt leads the Renal Research Group within the University of Leicester. His research is focused on a bench to bedside approach to improving understanding of the pathogenesis of IgA nephropathy – a common global cause of kidney failure. As such he will be heavily involved in the new centre and said: “It will offer a transformative approach to the study and care of children with rare kidney diseases.

“Having worked with Louise to help develop the LifeArc proposal it is clear to me that this programme of work has the potential to transform how adult and paediatric nephrologists work together to find cures for rare kidney diseases. 

“LifeArc will leverage the 25 years plus expertise we have in Leicester in the study of IgAN and IgA vasculitis, two rare causes of kidney disease that affect both adults and children, and will utilise the cutting-edge technologies we have available in The Mayer IgA Nephropathy Laboratories to study changes at the molecular level in the kidneys of children with these diseases.” 

Dr Louise Oni said: “This UK wide project aims to create a culture of constant learning to bring rapid advances to patients of all ages living with kidney diseases. It will start by focusing on children with rare kidney diseases to attempt to halt the journey to kidney failure and then upscale into adult patients. Through collaboration, the templates presented by these rare disease centres will support mass transformation to benefit many other patients.”

Dr Aisling McMahon, executive director of research at Kidney Research UK, added: “Ensuring that everyone has equal access to innovations and new therapies designed to benefit kidney patients is a key priority for Kidney Research UK. We are delighted to be co-funding this new centre with LifeArc and working in partnership with them and the renal research community to deliver this exciting project.”

Kathryn Croker, a Leicester Renal Unit patient, faced kidney failure after being diagnosed with the rare disease IgA vasculitis, aged just 13. She received a successful kidney transplant from her dad and now volunteers with Kidney Research UK.

She said the project had the power to change people’s lives, adding: “Hopefully in the next 20 years or less, what I’ve experienced since childhood will be a thing of the past because I don’t want anyone to go through what I have. This new research centre is an exciting opportunity to achieve that.”

The new LifeArc-Kidney Research UK Centre for Rare Kidney Diseases is one of four new centres to be funded by the non-profit medical charity, LifeArc, with the aim of overcoming barriers that ordinarily prevent new tests and treatments reaching patients.

Globally, there are more than 300 million people living with rare diseases. However, rare disease research can be fragmented. Researchers can lack access to specialist facilities, as well as advice on regulation, trial designs, preclinical regulatory requirements, and translational project management, which are vital in getting new innovations to patients.