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
  • (Cryo)crystalglobulin-induced nephropathy
  • Crystal-storing histiocytosis
  • Fibrillary Glomerulonephritis
  • Immunotactoid/Glomerulonephritis with Monoclonal Immunoglobulin Deposits (GOMMID)
  • Light chain cast nephropathy
  • Light chain Fanconi Syndrome
  • Monoclonal Immunoglobulin Deposition Disease
  • Proliferative glomerulonephritis with monoclonal immunoglobulin deposits – PGNMID
  • Proximal tubulopathy without crystals
  • Thrombotic Microangiopathy with monoclonal gammopathy
  • Type 1 cryoglobulinaemic Glomerulonephritis

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.