RaDaR Research Papers
- Distribution of epidemiology and clinical characteristics of RaDaR participants pre-print reporting (Wong et al MedRxiv, 2023; (https://www.medrxiv.org/content/10.1101/2023.09.24.23296009v1)
- 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
RaDaR Research Posters
- Barratt et al. Natural History of IgA Nephropathy. Amer Soc Nephrol. 2021
- Saleem et al. Natural History of FSGS. Amer Soc Nephrol. 2021.
- Saleem et al. Proteinuria and associated endpoints and association with renal survival in FSGS. Amer Soc Nephrol. 2021.
- Pitcher et al. Proteinuria and its association with disease progression in IgA nephropathy. Amer Soc Nephrol. Orlando, FL 2022.
- Wong et al. Genotype and renal outcomes in Alport Syndrome. Amer Soc Nephrol. Orlando, FL. 2022.
- Pitcher et al. Proteinuria and its association with disease progression in IgA nephropathy. National Kidney Foundation, Austin TX 2023.
- 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
- Sy et al. Epidemiology of rare kidney diseases in the United Kingdom using a large rare renal registry. ICPE, Halifax Nova Scotia, Canada 2023.
- Pitcher et al. Proteinuria and Disease Progression in the RaDaR IgA Nephropathy Cohort. International IgA Nephropathy Network, Tokyo, Japan 2023.
- 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
- 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.
- 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.
- Gittus et al. Centre-Level Variation in Tolvaptan Prescribing for ADPKD in the UK UKKW 2023
- Mercer et all. Estimating delay in time to kidney failure or death for treatment effects on proteinuria in IgA nephropathy ERA Congress Milan 2023
Papers using RaDaR data or infrastructure
- Treatment and long-term outcome in primary distal renal tubular acidosis Nephrology Dialysis Transplantation, Volume 34, Issue 6, June 2019, Pages 981–991.
- 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.
- 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
- Response to First Course of Intensified Immunosuppression in Genetically-Stratified Steroid Resistant Nephrotic Syndrome. Clin J Am Soc Nephrol. 2020 Apr 21:
- A role for OCRL in glomerular function and disease. Pediatr Nephrol. 2020 Apr;35(4):641-648.
- 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
- 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
- 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...|