• Data are collected from all adult and paediatric Renal Units in Australia and New Zealand on all persons receiving renal replacement therapy (RRT), either dialysis or kidney transplantation, for the treatment of end stage kidney disease (ESKD)
• Data are collected on all deceased organ donors in Australian and New Zealand from the Australian Organ and Tissue Authority and Organ Donation New Zealand
• Data are collected on all living kidney donors in Australia and New Zealand from all renal transplanting unitsData are collected on all eye and tissue donors from eye and tissue banks
• Data are collected on kidney transplant waiting lists and organ matches from the Australian National Organ Matching Service (NOMS)
• Data are collected on characteristics and outcomes of peritoneal dialysis patients utilising the HomeChoice Claria with ShareSource APD machine technology from Baxter Healthcare.

• Real time data is collected on all incident patients commencing RRT, change of RRT modality, change in treating centre, death or transplantation, as well as other major events such as peritonitis or new cancer diagnoses.
• An annual survey is collected from all dialysis and transplant units on all end stage kidney disease patients on kidney replacement therapy, in Australia and New Zealand, as 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.
• Annual data collection commenced from 31 December 2004. Prior to April 2004, data was collected twice a year at 31st March and 30th September.
• Data is collected on organ donors from donation coordinators as soon as practical following each donation event.A monthly summary of transplant activities is received from OrganMatch and cross-checked against organ donor records.
• Data is submitted on all living donation events on a monthly basis by all transplanting units either through an electronic or paper based data entry formUnits are contacted directly is data has not been submitted each mont
• Transplant wait listing and OrganMatch data is transferred securely on a monthly and annual basis from OrganMatch under the terms of a data transfer agreement. A similar arrangement with New Zealand Blood Service is being pursued.
• Data is transferred securely on a monthly and annual basis from Baxter Healthcare under the terms of a memorandum of understanding.
• There is voluntary participation by all physicians/surgeons involved in dialysis/transplant treatmentin both countries.
• A list of the participating units is available from the most recent ANZDATA Report Contents file on the ANZDATA website and is published with a wide national and international circulation

Electronic data transfer

• Data entry using an online system https://services.anzdata.org.au/
• Data transfer using an application programming interface (API) via Web Services https://services.anzdata.org.au/webservices
• Data upload submitted via a secure report depot service

Pre-printed survey forms

• A pre-printed survey form of previously recorded information for each patient is distributed for updating purposes annual
• Separate data forms for recording specific details of parenthood, paediatric education assessment, acute rejection, cancer, peritonitis and COVID-19 infection are also distributed.

Data entry in the registry

• Data returned via the pre-printed survey form is entered into the online system by ANZDATA administrative staff

New collection variables are suggested by ANZDATA clinical working groups and are implemented to further inform on outcomes of patients receiving KRT for ESKD. Click on the tabs below for more details on the element characteristics, how they are collected and when to be reported (either by the paper forms or via the electronic data collection system), per year of implementation. A full list of ANZDATA DATA forms are available in electronic format. The ANZDATA data dictionary and ANZDATA Post Survey Dataset Specifications describes the structure of the database. This is updated whenever a revised data collection form is produced and also whenever coding changes or database modifications are made.

Summary of Survey data variables introduced

• New Hybrid Dialysis Therapy from Survey 74 (2023)

• New First Peritoneal Dialysis Catheter Insertion Date Surevy 74 (2023)

• New Genetic Testing for Primary Kidney Disease Survey 74 (2023)

• Updated Primary Kidney Disease (PKD) code variables explained. Appendix 1 – PKD Codes
• Primary Kidney Disease How to Guide
• Updated Self Care Dialysis (patient where dialysis is performed with minimal assistance from a health care professional)
• Change to Treatment Codes – Convention and Quotidian data no longer being collected
• Graft Failure more precise classification of the type of graft rejection
• Rejection (Graft) (to capture more accurately the types of acute rejection
• Withdrawal from Dialysis (Date of Last Dialysis) The intentional and long term cessation of dialysis treatment by a patient in the context of a change to a conservative (palliative) treatment pathway.
• Community House (Code ‘Y’)
• Ethnicity (Up to two categories of Ethnicity a patient identify with)
• Calciphylaxis Episode (Date of first episode diagnosed in a survey)
• Non-Registry Trials (Optional reporting for those on a drug trial)
• Haemodiafiltration (HDF) Substitution Volume (For those on Haemodiafiltration only)
• 24-hour residual Urine Volume (for those on Peritoneal Dialysis only)
• Surgical Transplant Anastomosis Details Form (New transplants form September 2019)
• Transplant Assessment Pathway (National Indigenous Kidney Transplant Taskforce Data Enhancement Project)

• All data must be prepared to the Registry’s data set specifications dependent on method of collection
• The same variables are collected through each method of data collection (see below).
• Increased use of online and automated data collection is part of ANZDATA’s strategic direction with a plan to gradually phase out paper based data collection. 
• Mechanisms to ensure data completeness and accuracy are outlined in procedure 2.4

Common Data Codes

Click on the below links to access the list of centre codes, dialyser brand coded and more…