Thousands of people living with rare kidney disease will get access to improved diagnostics, treatments and potentially cures, thanks to a huge funding boost from the medical charities LifeArc and Kidney Research UK and led by experts from the University of Liverpool and Alder Hey Children’s NHS Foundation Trust.
Over the next five years, the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases will create a £9.4m ‘UK Kidney Ecosystem’ which will develop new treatments for children and adults.
The Centre will bring together scientists, clinicians, patients, and other stakeholders to work together as one kidney community and will be supported by an additional £1m funding from Kidney Research UK. The Centre will initially focus on children, such as those treated at Alder Hey and other UK children’s kidney centres, to find new treatments to slow the journey to kidney failure. It will later extend its efforts to include adult patients.
A report published by Kidney Research UK last year warned that kidney failure rates are increasing so fast that they could overwhelm the healthcare system within a decade. Urgent action is needed to address this crisis.
In children the majority of kidney failure is due to a rare disease. The Centre will be led by the children’s kidney consultant Dr Louise Oni who works as a Senior Lecturer in Paediatric Nephrology at the University of Liverpool and honorary consultant paediatric nephrologist at Alder Hey Children’s Hospital.
Dr Louise Oni said: “We are incredibly grateful for the opportunity to establish the Lifearc-Kidney Research UK Centre for Rare Kidney Diseases. This UK wide project will unite all of the systems and gather all of the people to work together. This will create a culture of constant learning to bring faster advances to patients living with rare kidney diseases.”
Dr Oni will be joined by other researchers from the University of Liverpool including Professor Christian Hedrich, Professor of Child Health, Professor Claire Eyers, Associate Pro-Vice-Chancellor for Research and Impact (HLS) and Professor of Biological Mass Spectrometry, and Simeon Yates, Professor of Digital Culture.
Five year old Jaidon from Crewe was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARKPD) when he was just four days old. 1 in 20,000 babies are born with this rare genetic condition where the kidneys and liver eventually fail. Jaidon is on the organ waiting list for a kidney and liver transplant. Jaidon’s mum Kayleigh travels with him to Alder Hey six days a week from their home in Crewe for 5-6 hours of dialysis at a time.
Jaidon with Mum and baby Sister
Kayleigh said: “It’s heart-breaking seeing Jaidon miss out on some of the things other children get to do, because most of his life is spent attached to a machine to keep him alive. The care at Alder Hey has been amazing but the impact this condition has on Jaidon’s life and all of us as a family including his little sister, is overwhelming at times. We really hope there will be advances in treatments in the future to prevent other children going through what Jaidon has too.”
Globally, there are more than 300 million people living with rare diseases like Jaidon 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 project management, which are vital in getting new treatments to patients.
The new LifeArc-Kidney Research UK Centre for Rare Kidney Diseases is one of four new centres to be funded by LifeArc, with the aim of overcoming these barriers.
Professor John Chester, Director of Research and Innovation at Alder Hey Children’s NHS Trust said: “Research into new treatments is crucial for advancing healthcare, improving patient outcomes, and ultimately enhancing quality of life for people around the world. This incredible grant provides the opportunity for more groundbreaking discoveries in to rare kidney diseases to come into fruition. Alder Hey is always striving to drive research and innovation forward and we’re excited to see how this new ecosystem will improve the lives of our children and young people long in to the future.”