Data Management

Data Collection

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OverviewScopeNature of Data CollectionMethods

Overview

ANZORRG collects and manages data through its Registries to support clinical care, research, quality improvement, and system monitoring across Australia and Aotearoa New Zealand. This page provides information on the scope, nature, and methods of data collection for ANZORRG, with Registry-specific details.

Across our Registries, data are collected from contributing units, donation and transplant services, and other partners. Collection methods include real-time event reporting, annual surveys, electronic data transfer, and secure data submission portals. Participation by clinicians and services is voluntary but essential to maintaining high-quality, comprehensive data that inform practice and policy.

Below, you’ll find:

  • An overview of ANZORRG-wide data collection approaches
  • Registry-specific data collection information
  • Guidance on data submission methods and completeness
  • Updates on changes to data collection and coding

Scope

ANZORRG Registries collect data on key patient populations and clinical activities to support safety and quality improvement in care and outcomes. Data are contributed by health services, donation and transplant programs, and clinical partners across Australia and Aotearoa New Zealand. This scope of data collection includes:

  • Data collected from all adult and paediatric Renal Units in Australia and Aotearoa New Zealand on all persons receiving renal replacement therapy, either dialysis or kidney transplantation, for the treatment of end-stage kidney disease
  • Data are collected on all deceased organ donors in Australia and Aotearoa New Zealand from DonateLife agencies across states and territories and from Organ Donation New Zealand
  • Data are collected from all adult and paediatric Heart Transplant Units in Australia and Aotearoa New Zealand on all persons receiving heart transplantation for the treatment of end-stage heart disease
  • Data are collected from all adult and paediatric Lung Transplant Units in Australia and Aotearoa New Zealand on all persons receiving lung transplantation for the treatment of end-stage lung disease
  • Data are also collected on all eye and tissue donors from eye and tissue banks across Australia and Aotearoa New Zealand
  • Data are collected on all living kidney donors in Australia and Aotearoa New Zealand from all renal transplanting units and through the Australia and Aotearoa New Zealand Paired Kidney Exchange
  • Data are collected on organ transplant waiting lists and organ matches from OrganMatch Australia and New Zealand Blood Service
  • Data are collected on characteristics and outcomes of peritoneal dialysis patients using the HomeChoice Claria with ShareSource APD machine technology from Vantive (formerly Baxter Healthcare)

Nature of Data Collection

ANZORRG Registries collect data through a combination of real-time reporting, annual surveys, and secure data transfers from clinical units, donation agencies, and other sector partners across Australia and Aotearoa New Zealand. While each Registry tailors its collection processes to its specific scope, all aim to support quality improvement, monitor outcomes, benchmark performance, inform policy and planning, support research, enhance patient safety, and promote equitable access to care.

ANZDATA collects real-time data on incident patients starting renal replacement therapy, changes in treatment modality or treating centre, deaths, transplantations, and other major events such as peritonitis or new cancer diagnoses. An annual survey is completed by all dialysis and transplant units on all end-stage kidney disease patients receiving kidney replacement therapy as of 31 December. The survey captures both a record of events from the past year and a snapshot of patients at that date.

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Organ donor data are collected from donation coordinators as soon as practical after each donation event. Transplant activity summaries are received monthly from OrganMatch and cross-checked against organ donor records. Transplant waitlist from OrganMatch data are transferred securely each month and year under a data transfer agreement. A similar arrangement with the New Zealand Blood Service exists.

ANZLKD collects living donation data submitted monthly by transplanting units via electronic or paper forms.  Australian and New Zealand Paired Kidney Exchange (ANZKX) Program report data on successful chains of living kidney donation to ANZLKD.

ANZETD collects monthly activity data on eye and tissue donation and transplantation.

ANZHTR collects monthly heart transplant activity data and near real-time event data. Transplant waitlist information from OrganMatch is securely transferred to the Registry each month.

ANZLUNG collects quarterly data on lung transplants, including event data on donor and recipient.

Methods of Data Collection

Most data are submitted electronically through ANZORRG’s secure online system. Contributing units can enter data directly, transfer data via an application programming interface (API) using web services, or upload files through SAHMRI LiquidFiles

For the annual survey, pre-printed forms containing previously recorded patient information are distributed to units for updating. Additional forms are provided to collect specific details on parenthood, paediatric education assessment, acute rejection, cancer and peritonitis

Where survey forms are returned in hard copy, ANZORRG administrative staff enter the information into the online system