Who do I register?

All patients, resident in Australia or New Zealand, receiving renal replacement therapy (dialysis or kidney transplantation) where the intention to treat is long-term, i.e. medical opinion is that kidney function will not recover. Cases of acute kidney injury are excluded unless they lead to a permanent requirement for dialysis. People who move to Australia or New Zealand from overseas permanently and either have a functioning kidney transplant or commence dialysis, are also eligible for registration.

When do I register new patients?

New patients who commence dialysis or receive a pre-emptive kidney transplant should be notified as they occur. Units are requested to report this data at least monthly, either via a web-based interface or paper submission.

How do I access my data?

You can ask to see your own information at any time or get copies of the reports that ANZDATA make. If you have any questions or concerns about giving your information to ANZDATA at any stage, you can talk to your kidney doctor. You can also contact ANZDATA by phone (+61 8 8128 4758) or by email anzdata@anzdata.org.au.

Is patient registration mandatory?

There is voluntary participation by all physicians/surgeons involved in dialysis/transplant treatment in both countries. We encourage 100% data capture of all ESKD patients requiring RRT. Patients are distributed information outlining the nature and purpose of the Registry and information collected, offered an opportunity to view that data and ask questions, and the opportunity to request withdrawal of part or all of their data.

What is reported to the ANZDATA?

Real time data is collected on all new incident patients commencing RRT, changes of RRT modality, changes in treating centre, death and other major events such as new cancer diagnoses, peritonitis and acute rejections. An annual survey is collected from all dialysis and transplant units in Australia and New Zealand at 31st December. The annual survey encompasses all patient events that have occurred in the previous twelve months as well as a “snapshot” of all dialysis and transplants patients on those dates.

Does the Registry accept historical data?

Yes, if the data is available. Data provision prior to the open survey periods can be provided directly to the Registry Office in a secure manner Data returned via the pre-printed survey form is entered into the online system by ANZDATA administrative staff. This data will then be included in the next iteration of any analysis and reports.

What does the Registry do with the data?

The main ways the Registry use information collected are:
• Making reports with the latest information about patients with kidney failure;
• Sending reports back to each hospital and telling them how their patients are doing compared to other hospitals, and to previous performance;
• Understanding the quality, type and place of care people receive;
• Understanding the type of kidney disease people get, and how they are treated;
• Understanding how many people have kidney failure and what health care they need, so that the best health care services can be set up to look after them;
• Helping people do research so they can understand more about kidney failure and the best ways to treat it and keep patients healthier.

When is survey data required to be reported?

Survey data is required to be reported back to the Registry by March 31st, every year, to assist with the production of the Registry’s annual report. This survey is on treatment and outcomes for the period up to the 31st December of the previous year.

How often is data updated and reported?

Incidence data is encouraged to be reported in real time at commencement of renal replacement therapy (dialysis or transplantation) or at the time of a therapy outcome or event. Such events include a change in treatment facility (for example, hospital to satellite), change in treatment modality (for example, death or transplant) or certain events (acute graft rejection, peritonitis episode or diagnosis of new cancer type). Prevalence data is updated annually in the general census survey.

Can data be sent electronically?

Yes. Data can be reported via the Registry’ online data entry and reporting module with user specific permissions; data can be sent securely to the registry in comma separated file format for direct import or data can be electronically transferred via the Registry’s API Web Services. This is dependent on the Clinical information tool at contributing units and their in-house data management provisions and resources.

Who is responsible for registering donors?

ANZLKD commenced collecting data on living kidney donors in 2004. Donors need to consent for data to be collected on their donation event. The contributing Australian and New Zealand transplanting centres are responsible for registering living kidney donors. The respective country’s Paired Kidney Exchange Programs can also register living kidney donors. Follow up data is provided by the donor’s referring hospital on a yearly basis.

Can I register a Living Kidney Donor before donation surgery?

Data can be reported by paper forms in advance of living kidney donation but will not be entered on the database until after the donation event has occurred.

I have more unanswered questions.

Please visit our Contact Us page if you still have a question that has not yet been answered.