Research using RaDaR data
RaDaR studies have investigated long-term outcomes in rare kidney diseases and the relationship between proteinuria and progression to kidney failure.
Read the published findings, research posters and patient summaries.
RaDaR Data and Research
RaDaR holds clinical information about adults and children with rare kidney conditions, following their diagnoses, treatment and outcomes over time.
These records support studies of disease progression and treatment, helping researchers address questions that are difficult to investigate within individual centres.
What information does RaDaR hold?
RaDaR combines information recorded during routine care with additional details specific to particular conditions. Depending on the condition and the records available, this includes:
- Demographic information and kidney diagnoses
- Family history and genetic test results
- Laboratory results, kidney biopsy findings and imaging
- Medicines and treatments, including dialysis and transplantation
- Clinical observations and outcomes
The data dictionary describes the fields recorded within the registry and how they relate to different conditions. The information available for a study depends on what has been collected and how complete those records are.
How information is collected
Site teams enter recruitment and condition-specific information into RaDaR. Connected kidney centres also supply electronic updates through the UK Renal Data Collaboration (UKRDC) for participants who have consented to the registry.
The RaDaR team works with sites to resolve queries and improve the completeness of records.
Participant numbers, availability of laboratory records and recorded kidney replacement therapy, by disease cohort.
Guidance for academic, clinical and commercial organisations on requesting analyses and working with the RaDaR team.
Permissions
RaDaR’s collection and use of participant information are governed by its research approvals and consent arrangements. Proposed research projects are subject to review and approval.