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| 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.
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