Despite diagnosis and treatment options improving for the rare kidney condition, further action is urgently required.

Kidney Research UK and the Stoneygate Trust have announced new Manchester-based research programme dedicated to the study and treatment of the rare kidney condition, Alport syndrome, which is to begin work in early 2022.

The Manchester-based research hub aims to accelerate research, transform early diagnosis, and develop specific treatments for the disease.

Alport syndrome is a rare genetic disorder, but is the second most common cause of inherited chronic kidney disease. It is caused by faults in the genetic code for a particular type of collagen protein, essential to the normal structure and function of the kidney’s filtering system. Disruption of this protein causes progressive loss in kidney function and can also cause hearing loss and eye problems. Diagnosis and treatment for Alport syndrome has improved in the last decade, though more progress is urgently needed.

“Rare diseases have an enormous impact on an individual’s life, and they do not attract the critical mass of researchers required to enable rapid improvements in treatment,” Professor Rachel Lennon, Professor of Nephrology at the University of Manchester, said. “By bringing together expertise in cell and matrix biology, genetics and clinical practice, we aim to improve genetic testing and to progress a range of therapy options to extend kidney survival in patients with Alport syndrome.”

Sandra Currie, chief executive of Kidney Research UK commented: “Embarking on this new collaborative way of working, we are tackling this issue head on by bringing together a wealth of facilities and expertise. With this new Hub, we have the potential to accelerate the discovery and testing of new treatments, and possibly even a cure through gene therapy.”

With support from Kidney Research UK and a £2.55m investment from the Stoneygate Trust, the Manchester-based hub will be fronted by Professor Rachel Lennon from the University of Manchester, in collaboration with Professor Daniel Gale from University College London and Professor Neil Turner from the University of Edinburgh.

It is hoped that the Alport Research Hub can be used as a model to tackle many different kidney diseases and conditions in the future.