Registry Projects

To Improve the quality of care and outcomes for people with end stage kidney disease in Australia and New Zealand, the registry team explores innovative ways to inform development of practice, policy and health services. Our team includes practicing clinicians, epidemiologists, biostatisticians, researchers, project managers, clinical trialists, acedemics and consumers.

A number of current research programs are listed below and at varying stages of analyses and preparation for peer reviewed publication.

What is this research project about?

This research project aims to understand 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).
We would like to know what patients think about the quality indicator data we report and how it influences their kidney care journey.
We would like to know if this information is important to patients and how to make it more useful and accessible.

What will it involve?

The project will involve completing a brief (5-10 minute) survey to gather some basic information about you and your history with kidney disease. You will then participate in a focus group over Zoom with the researchers and 2-3 other patients.

More information about what is involved can be found in the short video and the participant information sheet below.

Participant Information

Quality-Indicator-Reporting-in-Kidney-Failure-Care-Participant-Information-Sheet Download

Patient Perspectives of Quality Indicator Reporting Study Consent Form Download

Video resources

https://vimeo.com/726886385

Patient Partners in research projects
Infographic summaries of ANZDATA reports
Co-design and delivery of consumer involvement at scientific meetings & conferences
BEAT-CKD YouTube channel

Why-get-involved-in-research-for-consumers-v2022.0.1 Download

Improving statistical methods to examine performance of Australian dialysis and kidney transplant centres
Assessing stakeholder comprehension and preferences

Assessing travel distrances and times from home to treatment centres for dialysis patients
Complex geospatial technology and mapping

Video resources

Design and evaluation of alternative models for organ allocation
Community preferences for organ allocation
Analysis of ethical concepts underpinning allocation Waitlisting & organ discards

Australian Orthopaedic Association
National Joint Replacement Registry
Australia and New Zealand Society of Cardiac and Thoracic Surgeons Database
National Death Index

Symptom Monitoring with Feedback Trials (SWIFT) Pilot & Main Study
Evaluating the impact of symptom monitoring with feedback of results to clinicians on quality of life of haemodialysis patients

Sophisticated modelling to advance statistical methods and accuratley predict future dialysis and transplant service demand, under various scenarios

The ANZDATA Parenthood Research group, rebranded as the Pregnancy Kidney Research Australia (PKRA) in 2023, is led by A/Prof Shilpa Jesudason Program Lead and Dr Erandi Hewawasam Program Manager. This research aims to support people with kidney disease to make informed choices about parenthood and achieve a successful pregnancy with the right care in place.