Patient population

The ANZDATA registry records the incidence, prevalence and outcome of all maintenance dialysis and transplant patients in Australia and New Zealand. Data are collected by means of survey forms for each patient at 6-month intervals until 2004, after which it was altered to a yearly survey ending on December 31, together with notification of key events in real time The cohort study included all patients with ESKD with or without PKD enrolled in the ANZDATA commencing RRT in Australia and New Zealand between May 15, 1963 and December 31, 2014. Patients who commenced RRT overseas were excluded.

All patients entered into the ANZDATA were considered by the treating nephrologist to have ESKD due to PKD and therefore thought to require long-term RRT at the time they were enrolled in the registry. The assignment of the primary renal disease as “polycystic kidney disease” is made by the treating nephrologist on clinical grounds. This definition has been unchanged over the course of the study. There is no requirement for confirmatory genetic testing. Treatment modality (dialysis vs. pre-emptive transplant) was assigned at the commencement of RRT. The primary outcomes examined were the incidence rate and age of onset of ESKD as well as the survival rate and characteristics of RRT. The treatment era was determined by the date of commencing dialysis, and divided into 10-year periods: 1963–1974, 1975–1984, 1985–1994, 1995–1994, 2005–2014.