Projects

Research

Study Groups

The National Registry of Rare Kidney Disease (RaDaR)

Project lead:
Melanie Dillon, RaDaR Project Lead, melanie.dillon@renalregistry.nhs.uk

Project contacts:
Detlef Bockenhauer, Chair of Rare Disease Committee, d.bockenhauer@ucl.ac.uk
Melanie Dillon, Linguistic Editor, RareRenal.org, melanie.dillon@renalregistry.nhs.uk

Project length:
Continuous

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

RaDaR Protocol

The National Registry of Rare Kidney Diseases (RaDaR) is an initiative established by the Renal Association. It is designed to pull together information from patients who have certain rare kidney diseases. The aim is to give a much better understanding of how these illnesses affect people and facilitate research.

The work is done in partnership with patients. Where the research leads to practical benefits, such as better diagnosis, treatments or general advice this will be publicised on the RareRenal.org website.

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

  • Adenine Phosphoribosyltransferase Deficiency (APRT-D)
  • Alport Syndrome
  • Atypical Haemolytic Uraemic Syndrome (aHUS)
  • Autosomal Dominant Polycystic Kidney Disease (ADPKD)
  • Autosomal Recessive Polycystic Kidney Disease (ARPKD)
  • Bartters Syndrome
  • C3 Glomerulopathy
  • Calciphylaxis
  • Cystinosis
  • Cystinuria
  • Dense Deposit Disease (DDD)
  • Dent Disease
  • Epilepsy, Ataxia, Sensorineural deafness, Tubulopathy Syndrome (EAST)
  • Gitelman Syndrome
  • Hepatocyte Nuclear Factor-1 Beta Mutations (HNF1B)
  • Hyperuricaemic Nephropathy
  • IgA Nephropathy
  • Liddle Syndromes
  • Lowe Syndrome
  • Membranous Nephropathy
  • Membranoproliferative Glomerulonephritis (MPGN)
  • Medullary Cystic Kidney Disease
  • Pregnancy and Chronic Kidney Disease
  • Primary Hyperoxaluria
  • 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
  • Vasculitis

For data entry guidelines, date of diagnosis and inclusion-exclusion criteria please see www.RareRenal.org

The RareRenal.org website was re-launched in June 2013. All of the established RDGs are authors of much of the information on the RareRenal.org website. This information is a valuable resource to patients and clinicians. The patient information pages have been accredited with the Information Standard.

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