Australian registries-ANZDATA and ANZOD

Abstract

Transplant registries are a proven valuable source of data about transplantation. The inclusion of all transplants conducted in a region or country provides a different perspective from that of other observational studies. They allow examination of activity levels and trends, provide descriptions of outcomes which avoid the selection bias inherent in randomized clinical trials and facilitate hypothesis-generating studies. Examination of rare or unusual diseases and their outcomes is another area of strength. The models and structures of registries vary throughout the world. In Australia and New Zealand, kidney transplant outcomes are combined with dialysis in the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry. Deceased solid-organ donor activity is recorded in the Australia and New Zealand Organ Donor (ANZOD) Registry. Both of these registries are conducted and governed along similar lines. Key factors include strong clinical links in data collection and governance, and the involvement of contributors in a wide variety of activities and output.