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Abstract: FR-PO639

NURTuRE-INS: A Biobank of United Kingdom Idiopathic Nephrotic Syndrome Patients to Enable Research and Disease Stratification

Session Information

Category: Glomerular Diseases

  • 1303 Glomerular Diseases: Clinical‚ Outcomes‚ and Trials


  • Colby, Liz, University of Bristol Faculty of Health Sciences, Bristol, United Kingdom
  • Benavente, Melissa, University of Nottingham School of Medicine, Nottingham, United Kingdom
  • Taal, Maarten W., University of Nottingham School of Medicine, Nottingham, United Kingdom
  • Davies, Elaine M., Kidney Research UK, Peterborough, United Kingdom
  • Nation, Michael L., Kidney Research UK, Peterborough, United Kingdom
  • Johnson, Tim S., The University of Sheffield, Sheffield, United Kingdom
  • Hale, Lorna J., UCB Pharma, Slough, United Kingdom
  • Andag, Uwe, Evotec AG, Hamburg, Hamburg, Germany
  • Skroblin, Philipp, Evotec AG, Hamburg, Hamburg, Germany
  • Unwin, Robert J., AstraZeneca PLC, Cambridge, United Kingdom
  • Koziell, Ania B., King's College London, London, United Kingdom
  • Welsh, Gavin Iain, University of Bristol Faculty of Health Sciences, Bristol, United Kingdom
  • Saleem, Moin, University of Bristol Faculty of Health Sciences, Bristol, United Kingdom

Idiopathic Nephrotic Syndrome (INS) is a heterogenous disease and current classification is based on observational responses to therapies. The NURTuRE-INS cohort has been established as part of the UK-first standardised renal-biorepository with linked clinical data to develop novel methods to stratify patients for better disease management. Funding and governance was achieved via a unique collaborative partnership between Kidney Research UK, industry and academic investigators.


Patients are being recruited from 14 adult and 8 paediatric centres throughout Great Britain. Detailed longitudinal clinical data will be collected alongside long-term outcomes with respect to end stage kidney disease and survival. Serum, plasma, urine, RNA and DNA samples are collected and processed according to strict industry standards. Clinically stained histology slides will be digitally scanned, and any surplus biopsy tissue blocks will be cut for additional immunohistology.


Recruitment commenced in October 2017 and 664 patients have been recruited with recruitment expected until December 2022. A summary of the cohort is presented in the table. All patients will have SNP array genotyping and exome sequencing and 74% of the cohort have had a kidney biopsy (46.4% FSGS, 50.1% Minimal Change, 3.5% Other). We are currently analysing the data for detailed molecular stratification, and further research studies are invited.


NURTuRE-INS is a unique resource of high-quality patient samples alongside clinical data to mechanistically investigate INS patients. This will result in better disease management and help develop new treatments, as stratifying patients prior to clinical trial entry is likely to increase their success. Access to the data and biosamples will be available by application to an independent Strategic Oversight and Access Committee next year.

NURTuRE-INS Cohort Characteristics
 Steroid ResistantSteroid SensitiveSteroids Not TriedUnknownTotal
Number of Patients8318204125774664
% Male43.4%44.4%35.0%53.9%57.9%60.8%52.9%
% White Ethnicity69.9%61.1%55.0%64.8%68.4%85.1%67.6%
Median Age of Onset (Years)
(Inter Quartile Range)
7 Yrs
(2.5 - 21)
3.5 Yrs
(2 - 14)
0.125 Yrs
(0 - 1.5)
16 Yrs
(3 - 46)
35 Yrs
(25 - 46)
38 Yrs
(24 - 60)
20 Yrs
(4 - 42.5)
% Undergone Kidney Transplantation25.3%16.7%45.0%2.7%24.6%10.8%9.9%


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