A new research hub dedicated to the study of Alport syndrome has been launched at the University of Manchester. The Stoneygate and Kidney Research UK Alport Research Hub, was created thanks to £2.55M investment from Stoneygate Trust in partnership with charity Kidney Research UK.
As well as centres across the UK, the Hub will provide a virtual collaborative centre for international research bringing together expertise from across the globe.
Alport syndrome is a rare genetic disorder, but it 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 protein essential to the normal structure and function of the kidney’s filtering system. Disruption of this protein causes progressive loss in kidney function. It can also cause hearing loss and eye problems.
The launch event attended by researchers, patients, and representatives of Stoneygate Trust including founder Sir Will Adderley, showcased the work that three research teams will be undertaking.
The Hub is directed 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, all leaders in the field. The launch event highlighted the impact that the funding will have on patients who are living with the genetic condition.
Sandra Currie, chief executive officer at Kidney Research UK said: “The generosity of Stoneygate Trust has allowed us to launch this incredibly exciting collaborative research hub. The work that will be conducted across Manchester, Edinburgh and London will be crucial to advancing outcomes for patients of this rare genetic disease. As a leading research charity, it is really exciting to be at the forefront of this new way of conducting research. Research into rare diseases in particular is often restricted by a lack of resources, but we are bringing together a wealth of facilities and expertise to focus on Alport syndrome which we hope will become the gold standard in future research proposals.”
The hub will have a physical base at the Wellcome Trust Centre for Cell-Matrix Research in Manchester. The centre is focussed on investigating the mechanisms underpinning how different molecules interact within cells, and how their disruption causes conditions such as kidney disease. A platform of new technologies will be used to test potential treatmentsfor Alport syndrome.
A virtual aspect of the hub will use a database of over 850 patients with abnormal Alport genes to help understand both the genetic and environmental factors that affect, and may predict, how quickly Alport syndrome progresses. This unique approach to research has been tipped to change the way in which rare disease should be researched in the future. Combining the resources, talent and specialisations of three academic institutions across the UK, the teams will help to accelerate findings at an even faster
Professor Rachel Lennon, Professor of Nephrology at the University of Manchester said: “Alport syndrome is a relatively rare disease condition, but it continues to have has a huge impact on the lives of those afflicted by it. The support from Stoneygate Trust and Kidney Research UK will dramatically help us to accelerate our understanding of the condition and allow us to develop life-changing treatments for future generations.”
