National Unified Renal Translational Research Enterprise: Idiopathic Nephrotic Syndrome (NURTuRE-INS) study

Colby, Elizabeth; Hayward, Samantha; Benavente, Melissa; Robertson, Fiona; Bierzynska, Agnieszka; Osborne, Amy; Parmesar, Kevon; Afzal, Maryam; Chapman, Tracey; Ullah, Fatima; Davies, Elaine; Nation, Michael; Cook, Wendy; Johnson, Tim; Andag, Uwe; Radresa, Olivier; Skroblin, Philipp; Bayerlova, Michaela; Unwin, Robert; Vuilleumier, Nicolas; Banks, Rosamonde E; Braddon, Fiona; Koziell, Ania; Taal, Maarten W; Welsh, Gavin I; Saleem, Moin A

Abstract

Background
Idiopathic Nephrotic Syndrome (INS) is a heterogenous disease and current classification is based on observational responses to therapies or kidney histology. The National Unified Renal Translational Research Enterprise (NURTuRE)-INS cohort aims to facilitate novel ways of stratifying INS patients to improve disease understanding, therapeutics, and design of clinical trials.

Methods
NURTuRE-INS is a prospective cohort study of children and adults with INS with a linked biorepository. All recruits had at least one sampling visit collecting serum, plasma, urine and blood for RNA and DNA extraction, frozen within 2 hours of collection. Clinical histology slides and biopsy tissue blocks were also collected.

Results
In total, 739 participants were recruited from 23 centres to NURTuRE-INS, half of whom were diagnosed in childhood (n = 365, 49%). The majority were white (n = 525, 71%) and the median age at recruitment was 32 (interquartile range 12-54). Steroid-sensitive nephrotic syndrome (SSNS) was the most common clinical diagnosis (n = 518, 70%). Of patients diagnosed in childhood who underwent a kidney biopsy - for SSNS (n=103), 76 demonstrated minimal change disease (MCD); whereas for steroid-resistant nephrotic syndrome (n=80), 21 had MCD. Almost all patients diagnosed in adulthood had a kidney biopsy (n = 352, 94%); 187 MCD and 162 focal segmental glomerulosclerosis.

Conclusions
NURTuRE-INS is a prospective cohort study with high-quality biosamples and longitudinal data that will assist research into the mechanistic stratification of INS. Samples and data will be available through a Strategic Access and Oversight Committee.

Citation

Colby, E., Hayward, S., Benavente, M., Robertson, F., Bierzynska, A., Osborne, A., Parmesar, K., Afzal, M., Chapman, T., Ullah, F., Davies, E., Nation, M., Cook, W., Johnson, T., Andag, U., Radresa, O., Skroblin, P., Bayerlova, M., Unwin, R., Vuilleumier, N., …Saleem, M. A. (2024). National Unified Renal Translational Research Enterprise: Idiopathic Nephrotic Syndrome (NURTuRE-INS) study. Clinical Kidney Journal, 17(8), Article sfae096. https://doi.org/10.1093/ckj/sfae096

• Journal Article Type: Article
• Acceptance Date: Mar 1, 2024
• Online Publication Date: Mar 30, 2024
• Publication Date: 2024-08
• Deposit Date: Mar 12, 2024
• Publicly Available Date: Mar 30, 2024
• Journal: Clinical Kidney Journal
• Print ISSN: 2048-8505
• Electronic ISSN: 2048-8513
• Publisher: Oxford University Press
• Peer Reviewed: Peer Reviewed
• Volume: 17
• Issue: 8
• Article Number: sfae096
• DOI: https://doi.org/10.1093/ckj/sfae096
• Keywords: biobank, focal segmental glomerulosclerosis, idiopathic nephrotic syndrome, minimal change disease
• Public URL: https://nottingham-repository.worktribe.com/output/32457888
• Publisher URL: https://academic.oup.com/ckj/advance-article/doi/10.1093/ckj/sfae096/7638200