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.
- Quality Indicator Reporting
- Pregnancy & Parenthood
- Consumer Engagement
- Centre Specific Reporting
- Geospatial Analyses
- Organ Allocation
- Data Linkage
- Patient Reported Outcome Measures
- Modelling Future Demand
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.
This research program aims to support people with kidney disease to make informed choices about parenthood and achieve a successful pregnancy with the right care in place. This research included:
- Multi-juristictional data linkage (hospital and perinatal data)
- Health professional survey & perspective study
- National survey of women with kidney disease about pregnancy information and edcuation CKD pregnancy registry
Consumer friendly visual abstacts
Parenthood with kidney disease Newsletter
- 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
- 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
- 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