Having a registry of patients with a rare disease is very beneficial and helps drive research and improve care. In the UK we have the UKIVAS registry. In Australia and New Zealand, they take the first steps to create a registry.
As patients and care givers we are honoured to be asked to help determine health and quality outcomes that will be part of the registry.
Please, spare the time to do the surveys and help fellow vascies to have better outcomes. The results will be shared with UKIVAS as well so we will benefit as well.
GPA, MPA, EGPA and AAV patients and carers, please.
Survey for People with ANCA-Associated Vasculitis and their Caregivers: Determining, by
consensus, health and quality outcomes for reporting in the Australia and New Zealand
Vasculitis Registry to improve ANCA-Associated Vasculitis care
Survey link: redcap.link/vasculitisoutcomes
The Australian and New Zealand Vasculitis Society (ANZVASC) has recently established the
Vasculitis Registry to better understand ANCA-Associated Vasculitis.
This registry is similar to those in the UK and Ireland.
We are seeking the opinions of people with ANCA-Associated Vasculitis and their caregivers,
about which registry outcomes are the most important to report to improve the care of this
disease. This will be compared to the opinions of clinicians.
The study will consist of three rounds of an online survey which takes about 10 to 15 minutes
each, undertaken over the next few months. The first round is now open and will close in 4
weeks. It can be accessed with the link above.
We ask you to please participate now in the first round and commit to completing all three
rounds. We will email you when the last two rounds are open.
This survey has been approved as a Quality Assurance activity at Monash Health (Reference
Number: RES-24-0000-590Q).
Thank you for your consideration in participating in this study.
