Collaboration required to improve lupus outcomes

The Australian lupus registry and biobank will play an integral role in improving the outcomes of  people living with lupus, both nationally and globally, a lupus expert says.

Professor Eric Morand, who is head of rheumatology at Monash Health, was speaking to the limbic following the publication of a perspective piece in the Medical Journal of Australia. 

He said lupus, which typically presents in women in early adult life, still confers a 1 in 10 chance of dying before the age of 40.

 Better measurement of clinical outcomes and new products were urgently required, he said.

“We’ve effectively had no new treatments for lupus for about 50 years despite massive breakthroughs in the management of other conditions including other rheumatic diseases,” he said.

He said the Australian Lupus Registry and Biobank and the Asia Pacific Lupus Collaboration, which were established in 2012, provided valuable frameworks for facilitating both clinical outcomes and translational research activity.

The fact lupus was more severe and more common in Indigenous Australians and Asian populations also provided some unique opportunities.

“Our goal is to do work of global impact,” he said.

Recent research output from the collaboration across nine countries included a validation of the Lupus Low Disease Activity State (LLDAS) – a state associated with good long-term outcomes.

Given the difficulty achieving remission in the complex and heterogeneous disease, the LLDAS provides a potential treatment target and measurement endpoint for clinical trials of novel therapies.

Professor Morand said more work was also required on the health and other costs associated with lupus. They were likely to be underestimated, he said.

“There is very little data on non-hospital costs and the loss of educational outcomes and workforce engagement due to the permanent impact of the disease from early adult life.”

He said Monash data soon to be released showed hospital costs associated with lupus were extremely high.

The 12th International Congress on SLE and the 7th Asian Congress on Autoimmunity are being held in Melbourne, 26-29 March.

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