February 2026
Key Lupus Surveys & Data Sources in Australia
(Posted 19th Feb 2026)
- Global Survey on Lupus (2025) – Australian Participation
The World Lupus Federation’s 2025 Global Survey includes responses from Australians and highlights major challenges faced by people living with lupus.
Key findings include:
- Nearly half of respondents reported kidney involvement, underscoring the seriousness of lupus nephritis.
- Ongoing need for better education, earlier diagnosis, and improved access to care.
This survey is shared locally by the Lupus Association of NSW, making it one of the most relevant sources for Australian insights.
While not a “survey” in the traditional sense, the ALRB is Australia’s most significant ongoing data collection effort for lupus.
It gathers:
- Clinical data
- Patient‑reported outcomes
- Biological samples
Its purpose is to support research, track disease patterns, and improve treatment approaches.
- Australian Lupus Registry – Patient Information & Stories
The Australian Lupus Registry also provides:
- Patient stories
- Living‑with‑lupus insights
- Educational resources
These qualitative insights help shape understanding of the lived experience of lupus in Australia.
- ASCIA – National Overview of Lupus in Australia
ASCIA (Australasian Society of Clinical Immunology and Allergy) provides national data and FAQs, including:
- Estimated 20,000+ people affected across Australia and New Zealand
- Challenges with diagnosis due to varied symptoms
- Overview of disease burden and care pathways
While not a survey, ASCIA’s data is widely used in policy and advocacy.
These organisations have been listed as source of information for all interested parties concerning Lupus
