National Registry of Rare Kidney Diseases (RaDaR)

 Nephrology / Posted 1 year ago

Would you like to know more about your kidney disease?

Would you consider joining a national database?

The National Registry of Rare Kidney Diseases (RaDaR) is a research initiative by UK kidney specialists (the Renal Association and the UK Renal Registry).

It is designed to gather information from patients with rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.

How does it work?

Information about your treatment and any medications you are on will be entered into the RaDaR database by a member of your hospital’s research team. You will be given login details to see your information online via a website called Patient View (www.PatientView.org), if your hospital is signed up to this.

Doctors and other researchers who are interested in your specific condition are working together as part of a Rare Disease Group (RDG). They have access to RaDaR to view your anonymised data and that of others with the same condition.

What would I be agreeing to?

Taking part in RaDaR means that you agree that relevant information about your medical history can be held on a secure computer system operated by the UK Renal Registry. You will be given a secure password that will let you see your information via Patient View, if this is available at your hospital. You can find out more about your kidney condition at the website RareRenal.org, which is supported by the Renal Association and the Rare Disease Groups.

By joining this study you give permission for researchers to use your past, present and future clinical data for ongoing and future ethically approved research into kidney disease and related conditions.

Data will be collected from a number of sources including:

  • Your GP and hospital records
  • The UK Renal Registry which collects data on patients with chronic kidney disease stage 3 and above and those who are on renal replacement treatments such as dialysis or transplant waiting lists. This helps monitor standards of care across the county. By taking part in RaDaR you agree for your UK Renal Registry data to be linked with that in your RaDaR record. This will include data items such as medications, dialysis sessions and transplant outcomes where applicable.

It is designed to pull together information from patients who have certain diagnoses.

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

 

  • Inclusion Criteria :
    • Children and adults with Idiopathic Nephrotic Syndrome (nephrotic range proteinuria and hypoalbuminaemeia) including:
    • Steroid Sensitive Nephrotic Syndrome (SSNS) with full or partial remission in response to steroids
    • Steroid Resistant Nephrotic Syndrome (SRNS) including primary or secondary steroid resistance, Congenital Nephrotic Syndrome (presumed steroid resistant) and Nephrotic Syndrome with Focal Segmental Glomerulosclerosis (FSGS).
    Patients will be approached to consent to the renal rare disease registry (RaDaR) separately and their identification for this study will be made from that registry. Please see website for list of eligible diagnoses.
  • Exclusion Criteria :
    • Secondary causes on Nephrotic Syndrome e.g. primary diagnosis of Glomerulonephritis (IgA Nephropathy, Membranoproliferative Glomerulonephritis, Membranous Nephropathy)
    • Vasculitis
    • Systemic Lupus Erythematosus
    • Diabetes
    • Obesity
    • Hypertension.
    We will exclude any patients for whom it is felt by the consenting clinician that fully informed consent is not possible.
  • Study start date : 02/01/2010
  • Study end date : 31/12/2020
  • Wales-Based Study Contact : Janet Woolweaver (Cardiff), Rachel Harford (Swansea)
  • Principal Investigator : Sian Griffin
Contact details

University Hospital of Wales and Singleton HospitalWales Wide research.renal@wales.nhs.uk rarerenal.org

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