Established in 2010, RaDaR provides a shared research resource for teams studying rare kidney conditions. It combines information recorded during routine care with details specific to each condition, such as genetic test results and kidney biopsy findings, where available.
Participating NHS sites recruit eligible patients through RaDaR’s approved consent procedures and contribute information to the registry. The RaDaR team works with these sites and Rare Disease Groups to check records, address gaps and improve the information available for research.
RaDaR was originally funded by the Medical Research Council, Kidney Research UK, Kidney Care UK and the Polycystic Kidney Disease Charity. It is now managed and funded by the UK Kidney Association.
Director
Deputy Director
Operational Lead - Research and RaDaR
Operations Manager
Research Governance & Delivery Manager
Research Administrator
Senior Data Manager
Data Manager
Data Quality and Improvement Officer
Senior Statistician
Statistician
Statistician
Clinical Research Fellow
Senior Developer
Junior Developer
RaDaR follows participants’ care over time. Site teams enter some information directly, while connected kidney centres can supply updates electronically through the UK Renal Data Collaboration (UKRDC).
The information available varies between conditions and participating sites. The team works with centres to resolve queries and improve the completeness of records, helping researchers assess which information can support their proposed studies.
Each Rare Disease Group focuses on a particular condition or several related conditions. Its members bring clinical and research expertise alongside the experience of patients and families.
The groups develop research proposals and contribute to clinical care pathways and patient information. They work with the RaDaR team to identify the information needed to investigate their conditions and improve understanding of treatment and outcomes.
Academic, clinical and industry researchers work with RaDaR to investigate rare kidney conditions and address gaps in the evidence available.
Projects can involve analysing existing registry records or identifying potential participants for approved studies and clinical trials. Research findings can also inform clinical guidelines and contribute evidence for the assessment of new treatments.
Proposed projects are reviewed through RaDaR’s research application and governance processes.
Using RaDaR for research