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. 2024 Mar 30;17(8):sfae096.
doi: 10.1093/ckj/sfae096. eCollection 2024 Aug.

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

Elizabeth Colby  1 , Samantha Hayward  1   2 , Melissa Benavente  3 , Fiona Robertson  3 , Agnieszka Bierzynska  1 , Amy Osborne  1 , Kevon Parmesar  1 , Maryam Afzal  1 , Tracey Chapman  1 , Fatima Ullah  1 , Elaine Davies  4 , Michael Nation  4 , Wendy Cook  5 , Tim Johnson  6 , Uwe Andag  7 , Olivier Radresa  7 , Philipp Skroblin  7 , Michaela Bayerlova  7 , Robert Unwin  8 , Nicolas Vuilleumier  9 , Rosamonde E Banks  10 , Fiona Braddon  11 , Ania Koziell  12   13 , Maarten W Taal  3   14 , Gavin I Welsh  1 , Moin A Saleem  1
Affiliations

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

Elizabeth Colby et al. Clin Kidney J. .

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 in 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: A total of 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 years (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 had MCD and 162 had 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.

Keywords: biobank; focal segmental glomerulosclerosis; idiopathic nephrotic syndrome; minimal change disease.

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Conflict of interest statement

M.W.T. reports consulting fees from Boehringer Ingelheim, honoraria and support to attend conferences from Bayer and a leadership role in the International Society of Nephrology. M.A.S. reports consulting fees from Travere and Purespring Therapeutics. R.E.B. reports grant funding and a patent with Randox Laboratories and support for attending meetings from Kidney Research UK. T.J. reports previous salary from UCB, consulting fees from UCB and Hybridize Therapeutics and shares in UCB. M.N reports a position on the QUOD Steering Committee. R.U. reports consulting fees from and stock in AstraZeneca and a leadership position in the Faculty of Pharmaceutical Medicine, Royal College of Physicians (London). The other authors declare that they have no competing interests.

Figures

Graphical Abstract
Graphical Abstract
Figure 1:
Figure 1:
Crossover between clinical and histological INS classification.
See this image and copyright information in PMC

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