About the registry

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History of ALRB

 

The development of the Australian Lupus Registry and Biobank (ALRB) was driven by the need to address gaps in the understanding and treatment of lupus within Australia. Recognising the complexity of lupus, characterised by its diverse manifestations and impacts on patients' lives, healthcare professionals and researchers sought to establish a comprehensive platform to support research and improve clinical care. The ALRB started in 2006 as a single-centre observational cohort study based within the Monash Lupus Clinic at Monash Medical Centre in Clayton, Victoria and was founded by Rheumatologists Professor Eric Morand and Associate Professor Alberta Hoi. Together, Professor Morand and Associate Professor Hoi established the first multi-disciplinary clinic in Australia for managing the care of Systemic Lupus Erythematosus (SLE) patients (the Monash Lupus Clinic). Clinical data and biological sample collection followed soon after. In 2015, Professor Morand and Associate Professor Hoi initiated a multisite extension of the data and sample collection to establish a national registry, which has been known as the ALRB ever since.

 

As of October 2023, over 800 patients from 13 public hospitals in Australia have been enrolled in the ALRB. The investigators of the ALRB have worked consistently to secure funding, partnering with hospitals and research institutions, and have continued to expand on the recruitment of participants. It is a national research infrastructure that has inputs from rheumatologists, nephrologists, patient advocacy groups, and other stakeholders.

 

Findings

To date, there have been 50 research projects conducted using data and samples collected from the Monash Lupus Clinic and 8 research projects conducted using multi-site ALRB data.

 

Some noteworthy findings of the research conducted to date include:

• Identification of changes in lupus patient blood cell behaviour,

• Identification of ethnic differences in lupus severity,

• Identification of an association between low vitamin D and lupus severity,

• Identification of differences between patient- and doctor-assessed disease activity,

• Identification of associations between steroid use and organ damage,

• Initial validation of the Lupus Low Disease Activity State,

• Efforts towards development of a cellular therapy to treat lupus; and,

• Efforts towards development of less harmful alternative to steroid treatment.

 

Access to ALRB data and samples

 

Researchers and medical professionals from hospitals, universities and the private sector within and outside Australia are eligible to make a request to use ALRB data and samples as long as they comply with the conditions set out in the current ALRB Participant Information Sheet and ALRB Data and Biospecimen Use Policy and Procedures. If you are interested in collaborating with ALRB researchers and conducting a research project in conjunction with the ALRB, please email us at med-lupusregistry@monash.edu.