Australian-first lupus registry and biobank to provide real world evidence of therapies

Dr Alberta Hoi and Professor Eric Morand

The Australian Lupus Registry and Biobank (ALRB) is essential to improving our understanding of systematic lupus erythematosus (SLE) and could be a world leader, according to experts including Monash University’s Professor Eric Morand.

Published today in the Medical Journal of Australia, the authors said the ALRB will be a valuable resource for clinicians, scientists, industry and government to provide real world evidence of clinical effectiveness of existing or new therapies and management strategies in patients with lupus.

“Lupus is a complex autoimmune disease with diverse symptoms, which place an unacceptable level of burden on affected patients,” said Professor Morand, Head of Rheumatology at Monash Health and Head, School of Clinical Sciences at Monash Health, Monash University.

“Australian data on lupus are scarce, with figures suggesting a prevalence of lupus that ranges from 19 per 100,000 in people of European ancestry to 92 per 100,000 in Indigenous Australians, similar to other chronic diseases such as hepatitis C.”

Professor Morand said that while survival rates have improved in the last fifty years, it is still a sobering thought that lupus, which typically presents in women in their twenties or thirties, confers a 1 in 10 chance of dying before the age of forty.

Despite those numbers, it wasn’t until the ALRB was established in 2012 that fundamental data regarding age, geographic and ethnic distribution; currently used treatments; and unmet needs of patients in Australia was consistently collected.

Ten Australian institutions are now recruiting patients with lupus to the ALRB across Victorian, New South Wales, South Australia and Western Australia, with the common goal of ‘improving treatment and outcomes for people with lupus’.

Economically, the registry also serves a vital purpose.

“In the complex Australian health care system, it is difficult to examine the different components of health care use, so the true economic costs for a disease such as lupus are often grossly underestimated,” said co-author Dr Alberta Hoi, Head of the Monash Lupus Clinic and chief investigator, Lupus and Arthritis Research Group at Monash University.

The ALRB will allow the tracking of health care uses related to the care of lupus in Australia and will provide data for benchmarking.

”With the rising costs of health care and a limited health budget, it is paramount that data are available to study the cost effectiveness of various management strategies,” said Dr Hoi.

“Health care use, based on annual patient self-report of hospitalisations, investigations and other health complications, may form the basis to derive cost.”

Professor Morand said the ALRB information may help measure the health consequences of different health care interventions.