About the registry
Research to discover a cure for lupus requires a close, collaborative relationship between doctors, patients, and scientists.
Australian lupus researchers understand the value of long-term lupus data collection and have now established a national lupus data gathering collaboration, the Australian Lupus Registry. Together, the partners can collect information on a much larger scale than they could individually – accelerating progress on lupus research.
Clinicians at Monash University/Monash Medical Centre have been collecting serum samples, DNA, as well as matching clinical and laboratory information from patients attending a specific lupus clinic since 2006. Expansion of this collection of data - past, present and into the future – to the national level will create an unique bank of information providing unique insights into the long-term health of people with lupus.
The Australian Lupus Registry is an ongoing project. It has already resulted in some noteworthy findings.
Researchers have identified links between certain immune system proteins, known as cytokines, and kidney and brain lupus. This may enable more targeted treatment in the future.
They have also made a number of useful findings that will provide clinicians with a greater understanding of lupus, disease activity and response to treatments, including:
changes in lupus patient blood cell behavior,
ethnic differences in lupus severity,
associations between low vitamin D and lupus severity,
differences between patient- and doctor-assessed disease activity,
associations between steroid use and organ damage,
and new potential markers of disease severity in the blood.
This information, and information that will be collected as the Australian Lupus Registry continues, will contribute significantly to what is known about this complex disease.