GRIT: The Glomerular Disease Registry

GRIT: The Glomerular Disease Registry

Background:

Glomerulonephritis are comprised of more than 20 different types of diseases characterised by an injury to the glomerulus (the basic filtration unit of the kidney). Although overall, these are rare diseases with a global primary incidence of 0.2 – 2.5 per 100,000 people/ year, they cause serious morbidity and high mortality and account for approximately 19% of incident ESRD cases in Australia in 2016.

There has been limited advancement in the discovery of novel therapeutic agents for glomerulonephritis due to knowledge gaps of underlying glomerular disease mechanisms. International registries/biobanks for these rare diseases have shed novel insights into the epidemiology and causation of various types of glomerulonephritis especially with the advent of developments in genomics and new technologies. There has been no such network in Australia and therefore no method to comprehensively and systematically collect data, biological samples or easy identification of patients with glomerulonephritis interested in clinical trials. The GRIT project aims to generate such a registry and biobank along with a cohort of ‘trial ready patients’ to bring patients and clinical trials together.

Aim:

To develop a Glomerular Disease Registry for the purpose of:

  1. A longitudinal data registry of patients with glomerular diseases
  2. A repository of biological sample storage
  3. Long-term follow up of glomerular diseases’ treatment and outcomes
  4. Easy identification of eligible patients for participation in future clinical trials

Research Methodology:

All incident and prevalent patients diagnosed with a glomerular disease or being treated for glomerulonephritis at participating renal units will be prospectively approached for enrolment.

Once participants are consented in into GRIT, and complete the baseline survey, there are no further follow up requirements from participants. DNA and blood samples will be collected and stored at the time of diagnosis from patients who consent to this aspect of the study. Treating clinicians will be surveyed annually to provide updated information regarding clinical status, treatment and outcomes where the participant has provided consent for this to happen. Outcomes will also be collected by data linkage from time to time, where this is available and the participant has provided consent. The participant will only be contacted if they have elected to be contacted for participating in future clinical research trials.

Current Status:

The cohort is active and recruiting since quarter 1 2020

Participating sites:

Concord Repatriation General Hospital

Liverpool Hospital

Nepean Hospital

Prince of Wales Hospital

Royal North Shore Hospital

St. George Hospital

Westmead Hospital