A. RICHARD KITCHING1,2,3, JUSTIN CHUA1,2,3, ANTHONY SAMMEL4, PAULA BUSSA2, JESSICA RYAN2,3, CHRIS ASKEW1, JAMES GRAY1,5, PRAVIN HISSARIA1,6, HOLLY HUTTON1,7, CHEN AU PEH1,6, KEVAN POLKINGHORNE1,2,3, SUSANNA PROUDMAN1,6, VICKI QUINCEY1,8, SANJAY SWAMINATHAN1,9, JOANNA TIEU1,10, MARK LITTLE11, TZE GOH1,12
1ANZVASC Quality and Disease Registry Committee, Australia and New Zealand Vasculitis Society, Clayton, Australia, 2Department of Nephrology, Monash Health, Clayton, Australia, 3Monash University Department of Medicine, Clayton, Australia, 4Department of Rheumatology, Prince of Wales Hospital, Randwick, Australia, 5Department of Rheumatology, Princess Alexander Hospital, Woolloongabba, Australia, 6Royal Adelaide Hospital, Adelaide, Australia, 7Department of Nephrology, The Alfred Hospital, Prahran, Australia, 8Department of Rheumatology, Waikato Hospital, Hamilton, New Zealand, 9Department of Clinical Immunology, Westmead Hospital, Westmead, Australia, 10Department of Rheumatology, The Queen Elizabeth Hospital, Woodville South, Australia, 11Trinity Kidney Centre, Trinity Translational Medicine Institute, School of Medicine, Trinity College, Dublin, Ireland, 12Department of Nephrology, Auckland Hospital, Auckland, New Zealand
Biography:
Professor Richard Kitching is a nephrologist physician-scientist working in translational and clinical research relating to vasculitis and immune kidney disease.
Aim:
To report on the establishment of the ANZVASC-QDR, with reference to ANCA-associated vasculitis (AAV).
Background:
AAV is a complex, multisystem, chronic disease. When the multidisciplinary Australia and New Zealand Vasculitis Society (ANZVASC) was established, a quality and disease registry was identified as a priority.
Methods:
In establishing the ANZVASC-QDR, ANZVASC worked with the European Vasculitis Society (EUVAS) using a EUVAS-designed REDCap data dictionary modified for ANZ. It retained the EUVAS compulsory questions, allowing future collaboration and data linkage. Community representatives were involved in registry development as Committee Members and ANZVASC Board Members.
Results:
An opt-in registry has been established with quality and research functions. Both incident and prevalent patients can be enrolled. The core dataset consists of an initial visit and yearly follow-ups. Data from additional visits can be entered for specific studies. Disease and treatment complications are recorded. Renal outcomes align with EUVAS definitions: temporary dialysis, eGFR <15 mL/min or dialysis for >90 days, and kidney transplantation. Consumers contributed to the development of self-reported ethnicity, and to including a patient reported outcome measure (PROM) for physical activity (IPAQ-SF). Other PROMs used are the AAV-PRO and EQ-5D-5L. Data access and publication policies, adapted from those used by ANZDATA, were approved by the ANZVASC Board and publicised. The existing Monash Vasculitis Registry migrated to the ANZVASC-QDR, and available participants reconsented. At 28/04/2025, seven sites in Australia and New Zealand were active in the ANZVASC-QDR (with governance underway at six sites) and 186 AAV participants were enrolled, with a median follow-up of 3 years (range 0-9).
Conclusion:
The ANZVASC-QDR has been established as a multidisciplinary quality and disease registry for AAV in Australia and New Zealand.