Data Collected

Epidemiologically sound data will be collected following diagnosis. Data will be collected onto a web based data collection form designed specifically for the kidney condition. It will record data for each patient in the following general format categories:

• Patient identifiers (for follow-up and possible linkage)
• Demographics
• Diagnosis Details (kidney biopsy results / imaging results and laboratory results)
• Specific disease details (based on diagnosis)
• Comorbidities and lifestyle factors
• Treatment (medical therapy)
• Outcomes (mortality, disease progression, cardiac and other complications)

For the Quality Registry, data will be collected following diagnosis and at six months and then annually.

For the Rare Diseases Registry, the data collection for legacy patients (diagnosed before 1st January 2014) will be a modified version of the above.