NURTuRE Study for Nephrotic Syndrome patients

NURTuRE (the National Unified Renal Translational Research Enterprise) is a unique kidney biobank for chronic kidney disease (CKD) and idiopathic nephrotic syndrome (INS), covering England, Scotland and Wales, which has the potential to unlock answers to some of the biggest questions about CKD and INS.

Biological samples (plasma, serum, urine, DNA and tissue) from 3,000 patients with CKD and over 800 patients with INS are being collected and stored under strict Standard Operating Procedures for both academic and industry research worldwide. This will lead to a greater ability to identify patients who will benefit from better, earlier diagnosis and person-specific new treatments, leading to better health outcomes.

We need patient volunteers for NURTuRE – no extra hospital visits… just your consent to be involved in this exciting, pioneering study.

If you are a patient with NS at one of the participating renal units, you may be offered the opportunity to take part in the NURTuRE biobank study. If you haven’t yet been approached, and you are interested in participating, please ask the doctor or nurse at your renal unit.

 NURTuRE is a research collaboration involving a charity, academia and industry, managed by Kidney Research UK and jointly led by the University of Bristol (NURTuRE-INS (NephroS) study) and the University of Nottingham (NURTuRE-CKD study).

Full details at www.nurturebiobank.org/patients

New RaDaR Cohort – MGRS

 

RaDaR is now open to a new Cohort of patients – Monoclonal Gammopathy of Renal Significance (MGRS) – which covers the following conditions:  

  • AH amyloidosis
  • AHL amyloidosis
  • AL amyloidosis
  • C3 glomerulonephritis with monoclonal gammopathy
  • Crystalglobulinaemia
  • Crystal-storing histiocytosis
  • Fibrillary Glomerulonephritis
  • Immunotactoid/Glomerulonephritis with Organised Microtubular Monoclonal Immunoglobulin Deposits (GOMMID)
  • Intracapillary monoclonal IgM without cryoglobulin
  • Intraglomerular/capillary lymphoma/leukaemia
  • Light chain cast nephropathy
  • Light chain proximal tubulopathy, crystalline
  • Light chain proximal tubulopathy, non crystalline
  • Monoclonal Immunoglobulin Deposition Disease (MIDD; includes Light Chain Deposition Disease – LCDD; Heavy Chair Deposition Disease – HCDD; and Light and Heavy Chain Deposition Disease – LHCDD)
  • Proliferative glomerulonephritis with monoclonal immunoglobulin deposits – PGNMID
  • Thrombotic Microangiopathy with monoclonal gammopathy
  • Type 1 cryoglobulinaemic Glomerulonephritis
  • Unclassified MGRS

No new approvals are needed to start recruiting these patients.

A Crib Sheet of details of the conditions that are included in the MGRS cohort is available to download from https://tinyurl.com/mgrs-crib-sheet or from request via Melanie.Dillon@renalregistry.nhs.uk

New Patient Information Leaflets

 

The Renal Association’s Patient Information Sub-committee aims to develop and maintain a high quality patient information resource for use by kidney doctors, patients, families and carers in the UK. The work is carried out in partnership with Kidney Care UK

The first round of leaflets have now been published on the RA website. This includes a leaflet on Pregnancy and Chronic Kidney Disease to tie in with 2018’s World Kidney Day theme of Kidney Disease and Women’s Health and written by the Pregnancy and CKD Rare Disease Group.