What information is collected?

There are currently eight causes/conditions associated with or leading to CKD on which the registry collects information. These include:

• Autosomal Dominant Polycystic Kidney Disease (ADPKD)
• Alports Disease
• C3 Nephropathy
• Focal Glomerular Sclerosis (FGS)
• Membranous Nephropathy
• IgA Disease
• Fibromuscular Dysplasia (FMD)
• Tuberous Sclerosis Complex and Lymphangioleiomyomatosis (TSC/LAM)

If you have been diagnosed with one of the above conditions and you agree to participate, 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 your condition leading to or associated with chronic kidney disease (CKD);
• Your diagnostic test results such as x-rays, 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.


In time more conditions associated with CKD will be added to the Registry.