Projects

Research

Study Groups

The National Registry of Rare Kidney Disease (RaDaR)

Project lead:
Danny Gale, Chair of Rare Disease Committee, d.gale@ucl.ac.uk

Project contacts:
Melanie Dillon, RaDaR Operations Officer, UK Renal Registry, melanie.dillon@renalregistry.nhs.uk

Project length:
Continuous

Project website(s):
RaDaR- NHS access only
RareRenal.org

The National Registry of Rare Kidney Diseases (RaDaR) is a Renal Association initiative designed to pull together information from patients with certain rare kidney diseases.

This will give a much better understanding of how these illnesses affect people. It will also speed up research.

Over 21,000 UK patients have been recruited since the study opened in 2010.

RaDaR is open for recruitment for children and adults with the following conditions:

  • Adenine Phosphoribosyltransferase Deficiency (APRT-D)
  • AH amyloidosis
  • AHL amyloidosis
  • AL amyloidosis
  • Alport Syndrome
  • Atypical Haemolytic Uraemic Syndrome (aHUS)
  • Autosomal Dominant Polycystic Kidney Disease (ADPKD)
  • Autosomal Recessive Polycystic Kidney Disease (ARPKD)
  • Bartters Syndrome
  • C3 glomerulonephritis with monoclonal gammopathy
  • C3 Glomerulopathy
  • Calciphylaxis
  • Crystalglobulinaemia
  • Crystal-storing histiocytosis
  • Cystinosis
  • Cystinuria
  • Dense Deposit Disease (DDD)
  • Dent Disease
  • Denys-Drash Syndrome
  • Epilepsy, Ataxia, Sensorineural deafness, Tubulopathy Syndrome (EAST)
  • Fabry Disease
  • Fibrillary Glomerulonephritis
  • Fibromuscular Dysplasia
  • Focal Segmental Glomerulosclerosis (FSGS)
  • Gitelman Syndrome
  • Hepatocyte Nuclear Factor-1 Beta Mutations (HNF1B)
  • Hyperuricaemic Nephropathy
  • IgA Nephropathy
  • Immunotactoid/Glomerulonephritis with Organised Microtubular Monoclonal Immunoglobulin Deposits (GOMMID)
  • Intracapillary monoclonal IgM without cryoglobulin
  • Intraglomerular/capillary lymphoma/leukaemia
  • Liddle Syndromes
  • Light chain cast nephropathy
  • Light chain proximal tubulopathy, crystalline
  • Light chain proximal tubulopathy, non crystalline
  • Lowe Syndrome
  • Membranous Nephropathy
  • Membranoproliferative Glomerulonephritis (MPGN)
  • Medullary Cystic Kidney Disease
  • Minimal Change Nephropathy
  • Monoclonal Immunoglobulin Deposition Disease (MIDD; includes Light Chain Deposition Disease – LCDD; Heavy Chair Deposition Disease – HCDD; and Light and Heavy Chain Deposition Disease – LHCDD)
  • Nail Patella Syndrome
  • Nephronophthisis (NPHP)
  • Pregnancy and Chronic Kidney Disease
  • Primary Hyperoxaluria
  • Proliferative glomerulonephritis with monoclonal immunoglobulin deposits – PGNMID
  • Proximal tubulopathy without crystals
  • Pure Red Cell Aplasia
  • Retroperitoneal Fibrosis
  • Shiga Toxin Associated Haemolytic Uraemic Syndrome (HUS)
  • Steroid Resistant Nephrotic Syndrome (SRNS)
  • Steroid Sensitive Nephrotic Syndrome (SSNS)
  • Thin Basement Membrane Nephropathy
  • Thrombotic Microangiopathy with monoclonal gammopathy
  • Type 1 cryoglobulinaemic Glomerulonephritis
  • Tuberous Sclerosis
  • Unclassified Monoclonal Gammopathy of Renal Significance (MGRS)
  • Vasculitis

For further information please see www.RareRenal.org or contact melanie.dillon@renalregistry.nhs.uk

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