Data is submitted on all living kidney donation events on a monthly basis, by all Australian and New Zealand transplanting units. Information is collected on the pre-donation assessment, the donation operation and annual donor follow-up. Collection of data is performed by various methods which include: using a secure online data entry system, transferring data through an application programming interface (API), uploading data via the Registry’s Secure Report Depot (SRD) service or paper based data entry forms.

What information is collected about Donors?

Information collected by the ANZLKD Registry includes the medical tests performed prior to transplantation, the exact type of surgery performed and the donor’s progress after the operation. Each year after the operation, the hospital which referred donors for transplantation will be asked to provide information about blood pressure, any new medical conditions which may have developed and results of a blood and urine test to check kidney function.  

The Registry does not collect details about address, telephone number, medical insurance or non‐medical matters such as occupation, income etc.

Is personal data ever released?

The identity of people in the database is not released publicly, nor in any reports. Measures have been put into place to ensure the security of all collated information. Reports and other output of the Registry will contain only general information, for example, the average age of people donating a kidney in a particular State.

What is this information used for?

The information is used primarily for quality assurance, and planning appropriate health services. ANZDATA releases reports on a variety of topics, including an Annual Report examining the rates and treatment of kidney failure in Australia and New Zealand. Information from the ANZLKD Registry will comprise part of these reports.

We also send to each kidney unit, each year, a report outlining their activity. These reports also compare the outcome of the treatment they provide with that of other units throughout the two countries. Reports are also produced at a state and national level, and from time to time analyses are also produced for renal units, government health departments and industry as particular questions arise.