Research - Rare Renal

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
ADPKD

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)

Recents Papers are below:

Papers using RaDaR data or infrastructure published 2019-20:

  1. Treatment and long-term outcome in primary distal renal tubular acidosis Nephrology Dialysis Transplantation, Volume 34, Issue 6, June 2019, Pages 981–991.
  2. 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.
  3. 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 
  4. Response to First Course of Intensified Immunosuppression in Genetically-Stratified Steroid Resistant Nephrotic Syndrome. Clin J Am Soc Nephrol. 2020 Apr 21:
  5. A role for OCRL in glomerular function and disease. Pediatr Nephrol. 2020 Apr;35(4):641-648.
  6. 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
  7. 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

Details about what RaDaR data is available here

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

Guidelines

NICE accredited clinical practice guidelines 

Available here

22nd Annual Report

Analyses about care provided to patients at UK renal centres.

Read the report

UKRR AKI Report

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

Read the report