What information is collected?

There are currently seven causes of CKD on which the registry collects information. These include:

  • focal segmental glomerulosclerosis
  • membranous glomerulonephritis
  • autosomal dominant polycystic kidney disease
  • IgA nephropathy
  • Alport syndrome
  • fibromuscular dysplasia
  • tuberous sclerosis complex

If you have been diagnosed with one of the above conditions, the registry will collect a minimum amount of information about you, including:

  • Your name, age, and details of your treating doctor so we can identify the progress of your treatment over time;
  • Your physical characteristics such as height, weight and gender;
  • Symptoms and circumstances leading up to the diagnosis of chronic kidney disease;
  • Your diagnostic test results such as blood and urine tests results;
  • Any other complications that may influence your care;
  • The type of treatment you receive;
  • Outcomes/any complications of illness or treatment.