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., …Saleem, M. A. (2024). National Unified Renal Translational Research Enterprise: Idiopathic Nephrotic Syndrome (NURTuRE-INS) study. Clinical Kidney Journal, https://doi.org/10.1093/ckj/sfae096

• Journal Article Type: Article
• Acceptance Date: Mar 1, 2024
• Online Publication Date: Mar 30, 2024
• Publication Date: Mar 30, 2024
• Deposit Date: Mar 12, 2024
• Publicly Available Date: Mar 30, 2024
• Print ISSN: 2048-8505
• Electronic ISSN: 2048-8513
• Publisher: Oxford University Press
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1093/ckj/sfae096
• Public URL: https://nottingham-repository.worktribe.com/output/32457888
• Publisher URL: https://academic.oup.com/ckj/advance-article/doi/10.1093/ckj/sfae096/7638200