Abstract: INFO06-FR
The Stoneygate Trust and Kidney Research United Kingdom (UK) Alport Research Hub: A National Model for Accelerated Discovery and Translation
Session Information
- Informational Posters - 2
October 23, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- No subcategory defined
Authors
- Branson, Angela, Manchester University NHS Foundation Trust, Manchester, England, United Kingdom
- Gear, Susie, Alport UK, Cirencester, Gloucestershire, United Kingdom
- Turner, A. Neil, The University of Edinburgh Division of Health Sciences, Edinburgh, Scotland, United Kingdom
- Gale, Daniel P., University College London, London, England, United Kingdom
- Davies, Elaine M., Kidney Research UK, Peterborough, England, United Kingdom
- Lennon, Rachel, The University of Manchester, Manchester, England, United Kingdom
Description
Background
Alport syndrome (AS) is a leading genetic cause of kidney failure. In 2022, the Stoneygate Trust and Kidney Research UK Alport Research Hub was established with a £2.55M, five-year award to transform diagnosis and treatment via a coordinated UK-wide network. Led by the University of Manchester, University College London (UCL), and the University of Edinburgh, the Hub integrates laboratory science, clinical registries, and patient partnership. We acknowledge Alport UK for their considerable support—patients are vital partners whose unique expertise and engagement at all levels drive and define our approach and success.
Methods
The Hub operates via two core pillars:
Physical Hub: Uses Manchester laboratory facilities to provide high-throughput expertise in basement membrane biology and animal models (mouse/zebrafish) for therapeutic testing.
Virtual Hub: Utilises the National Registry of Rare Kidney Diseases (RaDaR) for deep phenotyping of >1,300 AS participants, integrating whole-genome sequencing with longitudinal clinical data to identify genetic modifiers and biomarkers.
Results
Research Projects: Initial projects have established non-invasive basement membrane biomarkers and investigating responses to inflammatory injury in Alport kidneys.
Grant Program: Three project grants were awarded to expand scope: glycosaminoglycans (University of Nottingham), the cellular basis of hearing loss (UCL), and patient-reported outcomes for hearing (University of Birmingham).
Engagement: 20 companies to date; four commercial projects are complete, and four additional partnerships are underway, focusing on gene therapy and matrix biomarkers.
Regulatory Impact: RaDaR data analyses have been central to the ASSENT project, a public-private partnership with the FDA to validate surrogate endpoints for clinical trials.
Conclusions
The Alport Research Hub has successfully united UK clinical, scientific, and patient expertise, driving international engagement with academic and commercial partners. By centralising expertise and specialist techniques, the Hub accelerates and reduces the costs of precision therapies while improving the clinical trial landscape.
Future Directions
Future work will further integrate kidney and hearing research with clinical outcomes, continuing the Hub's mission to provide holistic, patient-centred breakthroughs.
Funding
- The Stoneygate Trust