RaDaR had a strong presence at this year’s American Society of Nephrology (ASN) Kidney Week, held in Houston, Texas from 6 to 9 November. Several studies using RaDaR data were presented across the meeting, alongside high-profile examples of RaDaR’s contribution to rare kidney disease research.
RaDaR’s contribution highlighted on the global stage
Dr Sherry Masoud, Renal SpR and RaDaR Clinical Research Fellow, presented her work on IgA nephropathy using the RaDaR cohort. She said:
“ASN was an incredible opportunity to showcase my RaDaR research and to see how prominently RaDaR data featured across the meeting, bridging the gap between real-world evidence and therapeutic development in rare kidney diseases.”
Additional RaDaR poster presentations included work by Katie Wong and colleagues on albumin-creatinine ratio, protein-creatinine ratio and non-albumin proteinuria as predictors of kidney failure in rare kidney diseases.
RaDaR Director Professor Daniel Gale also attended and reflected on the scale of the registry’s visibility:
“I was delighted to see RaDaR data and publications feature prominently across the meeting, especially in presentations of clinical trials. This is a testament to just how valuable real-world patient data can be in advancing treatments for rare kidney diseases.”
Professor Gale noted that RaDaR appeared in the opening plenary’s state-of-the-art and high-impact clinical trial presentations, with at least two late-breaking trials using RaDaR to recruit participants. A figure from a RaDaR publication was also displayed at large scale on the Novartis booth, emphasising the registry’s growing international recognition.
Why RaDaR’s presence at ASN matters
RaDaR is the UK's National Registry of Rare Kidney Diseases, established to improve understanding, outcomes and research opportunities for people living with rare kidney conditions. It now includes more than 37,000 patients across over 100 NHS sites, making it one of the world’s largest resources of its kind.
The registry provides detailed, longitudinal, real-world data that supports:
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Better understanding of disease progression across more than 30 rare kidney conditions
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National visibility of rare kidney disease outcomes, including recent analyses showing that rare diseases form a substantial proportion of patients reaching kidney failure
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Research readiness, offering rapid access to well-characterised cohorts for feasibility, recruitment and long-term follow-up
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Collaboration between centres, enabling clinicians, researchers, patient groups and industry partners to work from a shared evidence base
The visibility of RaDaR at ASN Kidney Week reflects its increasing role in international rare disease research, with real-world UK data now informing prognostic markers, supporting analysis of therapeutic targets and contributing to trial design.
Looking ahead
RaDaR will continue strengthening its dataset and supporting clinical and research teams across the UK. Its presence at ASN demonstrates the influence high-quality registry data can have in shaping the rare kidney disease research landscape worldwide.