Registry Projects
Overview
To improve the quality of care and outcomes for people with kidney failure and/or requiring organ replacement therapy in Australia and Aotearoa New Zealand, the Registry team explores innovative ways to inform the development of practice, policy, and health services.
Registry projects are research or quality improvement activities that use registry data to generate new evidence, evaluate care, or guide system improvements. These projects may include data analyses, linkages with other datasets, registry-based trials, and studies co-designed with consumers and clinicians to improve outcomes across Australia and Aotearoa New Zealand.
Current Projects
This PROMs project is a national CQR Capacity Building Grant that will develop a module within the ANZDATA Registry to routinely collect and report patient-reported outcome measures (PROMs). Through national consultation with patients, clinicians, and health services, the project will identify which PROMs are most meaningful and feasible to collect.
It will then pilot a digital system for cross-platform data capture and secure storage, along with visualisation tools that allow patients, clinicians, and services to view changes in PROMs data over time.
This work builds on ANZDATA’s experience collecting PROMs through registry-embedded trials such as SWIFT and TEACH-PD and form a core focus of the ANZDATA PROMs Working Group from 2025 onward.
The My Kidney Insights project is a national CQR Automation and Innovation Capacity Building Grant that aims to modernise ANZDATA’s reporting system by creating interactive, real-time dashboards that make registry data more accessible and useful for clinicians, researchers, and health services. These digital dashboards will replace static reports with dynamic visualisations, allowing users to explore and interpret data tailored to their needs.
By improving accessibility and timeliness of insights, My Kidney Insights will enhance decision-making, drive quality improvement, and strengthen engagement across the kidney health community.
This project examines improvements to Australia’s national kidney allocation system. It focuses on how donated kidneys are matched to patients on the transplant waiting list, ensuring the process is fair, transparent, and clinically effective.
The current work has centred on the development of the revised Kidney Only Allocation Algorithm (KOALA), led by the Transplantation Society of Australia and New Zealand (TSANZ). The aim of the project is to deliver the final specifications of a new Australian Kidney Allocation Algorithm that reflects stakeholder feedback and is informed by extensive modelling and outcomes simulations.
The revised algorithm introduces a continuous scoring system designed to balance equity, efficiency, and clinical outcomes. Key updates include:
- Improved matching for highly sensitised patients with rare immune profiles
- Longevity-based pairing of donor kidneys and recipients to maximise life years gained
- Extended priority for younger patients to reduce dialysis time and long-term sensitisation
- Consideration of “matchability” for different ethnicities to address differences in immune diversity
- Retention of time on the waitlist as an important measure of queueing equity
Read the proposed algorithm changes
TSANZ Proposal for a Revised Australian Deceased Donor Kidney Allocation Algorithm - 2025This project links ANZDATA with national clinical registries to better understand outcomes for dialysis and transplant patients who undergo surgery or require intensive care.
By connecting data from the Australian Orthopaedic Association National Joint Replacement Registry, the Australian and New Zealand Society of Cardiac and Thoracic Surgeons Cardiac Surgery Database, and the Australian and New Zealand Intensive Care Society Adult Patient Database, the project will provide new insights into post-surgical and critical care outcomes.
Recent Publications
Benchmarking ANZDATA's data collection against Commonwealth data
This project uses advanced geospatial modelling to explore where and how people access kidney care across Australia and Aotearoa New Zealand. By estimating travel times and distances between patients’ homes and dialysis units, the analyses identify areas where access may be limited and where new services could have the greatest impact. The project also examines patterns in kidney failure, including rising incidence among younger people linked to diabetes, and highlights hotspots of dialysis demand in metropolitan and regional areas.
In 2024, members of the ANZDATA Consumer Advisory Panel and Community Interest Register reviewed and provided feedback on this work, helping to ensure that the findings reflect real-world experiences and priorities.
Recent Maps
Change in dialysis incidence, 2001-2021.
Recent Publications
This project focuses on improving the way performance is measured and reported across Australian dialysis and kidney transplant units.
It explores how different stakeholders, including clinicians and health service managers, interpret and prefer to view performance data, helping to guide future reporting formats that are transparent, useful, and easy to understand.
Past Projects
Sophisticated modelling to accurately predict future dialysis and transplant service demand, under various scenarios
Publications
Understanding patients' views of ANZDATA and reporting of quality indicator* data in kidney care.
*Quality indicators include information of the outcomes of dialysis and transplant at different hospitals and kidney units (such as patient survival and peritonitis rates)