ANZ Vasculitis Registry

The Australia and New Zealand Vasculitis Quality and Disease Registry (ANZVASC-QDR)

In 2024, after several years of work, ANZVASC established a vasculitis registry in partnership with Monash University.

The Registry’s initial focus will be on ANCA-associated vasculitis and forms of large vessel vasculitis, in the areas of

Quality Improvement
Research
Education
Collaboration

The ANZVASC-QDR aims to

Improve quality of care by
- providing clinical quality data to units
- assessing patient reported outcomes to improve the understanding of the effects of vasculitis on quality of life
- reporting on the care of vasculitis in Australia and New Zealand
Establish a resource to support research
Establish national and international collaborations
Assist in the education and training of vasculitis professionals

The Registry can also:

Serve as a platform for future registry linked clinical trials
Perform post-marketing and other surveillance of new therapies and practices

Registry Governance

The Registry is hosted by Monash University. It uses REDCap, a secure and easy to use web-based application. Data is stored securely at the Monash University Helix Data Platform

The Registry has been approved by the Monash Health Human Research Ethics Committee (Australian national recognition) and the Auckland District Health Board Health and Disability Ethics Committee (New Zealand)

The ANZVASC Registry Committee advises the Registry on policy and activities. A data access and publications policy is available here Registry Data Access and Use Policy

Registry Structure

The Registry is based on Initial Data Entry, followed by an Annual Follow-Up. Its structure is pragmatic and flexible to allow additional entries. The format of the Registry is shown here:

Participating Sites

As of late 2024, several units have joined the registry:

Monash Health, VIC
The Central Adelaide Local Health Network, SA
Western Sydney Local Health District, NSW
The Prince of Wales Hospital, NSW
The Alfred Hospital, VIC
Auckland Hospital, NZ
Waikato Hospital, NZ

In early 2025, further hospital networks and units will join the registry.

Acknowledgement

CSL-Seqirus/Vifor is acknowledged for providing and unrestricted grant to assist in establishing and maintaining the ANZVASC-Quality and Disease Registry