RaDaR Research

RaDaR Research Papers

  1. Effects of rare kidney diseases on kidney failure: a longitudinal analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) cohort. (Wong et al. Lancet 2024 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)02843-X/fulltext )
  2. Description and Cross-Sectional Analyses of 25,880 Adults and Children in the UK National Registry of Rare Kidney Diseases Cohort. (Wong et al Kidney International Reports, 2024: https://www.kireports.org/article/S2468-0249(24)01699-1/fulltext)
  3. Long term outcomes in IgA nephropathy Pitcher et al Clinical Journal of the American Society of Nephrology, 2023 https://journals.lww.com/cjasn/fulltext/2023/06000/long_term_outcomes_in_iga_nephropathy.9.aspx
  4. Clinical Predictors of Long-term Outcomes in C3 Glomerulopathy and Immune-Complex Membranoproliferative Glomerulonephritis within the UK RaDaR Registry. Masoud S, Wong K, Downward L, Pitcher D, Webb NJ, Proudfoot C, RaDaR Consortium, Wong EK, Gale DP. medRxiv. 2024:2024-02.

RaDaR Research Posters

  1. Coe et al Effects of Proteinuria Reduction on Delay of Kidney Failure in Patients With Immunoglobulin A Nephropathy. American Nephrology Nurses Associate (ANNA) National Symposium in Orlando, FL 2024
  2. Pitcher et al. Proteinuria and its association with disease progression in IgA nephropathy. National Kidney Foundation, Austin TX 2023.
  3. Wong et al. The National Registry of Rare Kidney Diseases (RaDaR): cross-sectional analyses of 25,817 adults and children with rare kidney diseases in the UK. UK Kidney Week, Newport, Wales UK 2023
  4. Sy et al. Epidemiology of rare kidney diseases in the United Kingdom using a large rare renal registry. ICPE, Halifax Nova Scotia, Canada 2023.
  5. Pitcher et al. Proteinuria and Disease Progression in the RaDaR IgA Nephropathy Cohort. International IgA Nephropathy Network, Tokyo, Japan 2023.
  6. Downward et al. Development of a De Novo Model To Assess the Cost-Effectiveness of a New Treatment Option for Patients With Primary Immunoglobulin A Nephropathy. ISPOR, Boston, MA 2023
  7. Pitcher et al. Rate of Loss of eGFR and Time-Averaged Proteinuria in IgAN Patients Progressing From Early Stage Disease to Kidney Failure. Amer Soc Nephrol. Philadelphia PA 2023.
  8. Barrett et al, Levels of socioeconomic deprivation are associated with worse kidney outcomes in patients with IgA nephropathy: data from UK RaDaR, Amer Soc Nephrol. Philadelphia PA 2023.
  9. Downward et al. Patient characteristics and renal outcomes of C3G and IC-MPGN in the UK: a retrospective analysis of 287 patients in the UK RaDaR. Amer Soc Nephrol. Philadelphia PA 2023.
  10. Gittus et al. Centre-Level Variation in Tolvaptan Prescribing for ADPKD in the UK UKKW 2023
  11. Mercer et all. Estimating delay in time to kidney failure or death for treatment effects on proteinuria in IgA nephropathy ERA Congress Milan 2023
  12. Pitcher et al. Proteinuria and its association with disease progression in IgA nephropathy. Amer Soc Nephrol. Orlando, FL 2022.
  13. Wong et al. Genotype and renal outcomes in Alport Syndrome.  Amer Soc Nephrol. Orlando, FL. 2022.
  14. Barratt et al. Natural History of IgA Nephropathy. Amer Soc Nephrol. 2021
  15. Saleem et al. Natural History of FSGS. Amer Soc Nephrol. 2021.
  16. Saleem et al. Proteinuria and associated endpoints and association with renal survival in FSGS. Amer Soc Nephrol. 2021.


Papers using RaDaR data or infrastructure

  1. Developing Therapies for C3G: Report of the Kidney Health Initiative C3G trial endpoints work group. Nester et al. Clinical Journal of the American Society of Nephrology 2024
  2. A Randomized Controlled Clinical Trial Testing Effects of Lademirsen on Kidney Function Decline in Adults with Alport Syndrome. Clinical Journal of the American Society of Nephrology. 2024 (in press)
  3. Treatment and long-term outcome in primary distal renal tubular acidosis Nephrology Dialysis Transplantation, Volume 34, Issue 6, June 2019, Pages 981–991.
  4. High-throughput sequencing contributes to the diagnosis of tubulopathies and familial hypercalcemia hypocalciuria in adults Kidney International, Volume 96, Issue 6, December 2019, Pages 1408-1416.
  5. Molecular stratification of idiopathic nephrotic syndrome. Nat Rev Nephrol. 2019 Dec;15(12):750-765. doi: 10.1038/s41581-019-0217-5. Epub 2019 Oct 25. PMID: 31654044 
  6. Response to First Course of Intensified Immunosuppression in Genetically-Stratified Steroid Resistant Nephrotic Syndrome. Clin J Am Soc Nephrol. 2020 Apr 21:
  7. A role for OCRL in glomerular function and disease. Pediatr Nephrol. 2020 Apr;35(4):641-648.
  8. TBC1D8B Loss-of-Function Mutations Lead to X-Linked Nephrotic Syndrome via Defective Trafficking Pathways. Am J Hum Genet. 2019 Feb 7;104(2):348-355
  9. Large-Scale Whole-Genome Sequencing Reveals the Genetic Architecture of Primary Membranoproliferative GN and C3 Glomerulopathy, J Amer Soc Nephrol 2020. Feb;31(2):365-373. doi: 10.1681/ASN.2019040433. Epub 2020 Jan 9. PMID: 31919107
  10. Whole-genome sequencing of patients with rare diseases in a national health system. Nature. 2020 Jul;583(7814):96-102. doi: 10.1038/s41586-020-2434-2. Epub 2020 Jun 24. PMID: 32581362 


Rare Disease Group Trial Name Company Chief Investigator Study Sites   Study details
Membranous Nephropathy Efficacy and Safety of LNP023 Compared With Rituximab in Subjects With Idiopathic Membranous Nephropathy Novartis Dr Durga Kanigicherla Cardiff, Salford,Manchester, Leicester and London Royal Free   https://clinicaltrials.gov/ct2/show/NCT04154787
Alport Syndrome Study of SAR339375 in Patients With Alport Syndrome (HERA) Sanofi     https://clinicaltrials.gov/ct2/show/NCT02855268

A Medical Research Study Designed to Determine if Venglustat Can be a Future Treatment for ADPKD Patients (STAGED-PKD)

Genzyme, a Sanofi Company

  Sheffield, United Kingdom, S5 7AU (Ong, Albert C) https://clinicaltrials.gov/ct2/show/NCT03523728?recrs=a&cond=Autosomal+D...

A table listing all papers from the Renal registry and Rare Renal Registry is here

Details about previous research using RaDaR data can be found under the 'Reports' section of specific Rare Disease Groups (RDGs)


Details about what RaDaR data is available here

More details about how to use RaDaR data can be found by clicking here


NICE accredited clinical practice guidelines 

Available here

25th Annual Report

Analyses about the care provided to patients at UK renal centres.

Read the report

2022 UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

Read the report