Perth Lupus Registry

             

The Perth Systemic Lupus Erythematosus Registry (Perth Lupus Registry-PLR) is a collaboration between the WA Health and the University of Western Australia’s – School of Medicine & Pharmacology. The PLR will be a disease-specific database for SLE patients and record disease parameters in people with Systemic Lupus Erythematosus (SLE) among the West Australian population in order to allow for the following SLE research in Western Australia:

 

1)     Epidemiological characteristics (incidence/prevalence/genetic and environmental risk factors)

2)     Cross-sectional biomedical studies (biomarkers)

3)     Longitudinal studies (outcomes, predictors, biomarkers)

4)     Interventional studies (participation in clinical trials)

 

How can you participate?

For more information about the Perth Lupus Registry, please call or email the team on either (08) 6151 1041 (UWA), (08) 9346 4072 (SCGH) or warren.raymond@health.wa.gov.au to ask for a Patient Information and Consent Form to be sent to you. Participation is completely voluntary and can be ended at any given time.

 

How will your information be collected and stored?

Information will be collected during your routine visit with your doctor. If information is not available during this consultation (e.g. results of blood samples) then your information will be collected from medical records at the hospital or your health care providers.   The PLR takes your privacy very seriously and closely protects patient confidentiality. All information will be de-identified and stored on a dedicated secure server at UWA. The PLR has been approved by the Human Research Ethics Committee at QE II campus.

 

When will we see results from Perth Lupus Registry?

After every 12-24 months of data collection, the Perth Lupus Registry will analyse the data and publish the results at local scientific meetings, using only aggregated, de-identified data.

The first findings are expected to be released in 2017.

If you require any information please contact us at:
admin@lupuswa.com.au or phone 08 9388 2199 and leave a message.