LUPUS Research

RESEARCH TRIALS

The benefits of being involved

The major objective of healthcare is to improve the quality and quantity of life for patients. Research plays an essential role in this process as we aim to develop better treatments and to understand the causes of disease.

What many patients do not realise is that outcomes for patients in trials are generally better than for patients who are not in trials (regardless of whether they receive the new treatment being tested), due in part to the strict rules guiding the management of trial patients. As lupus is still a relatively uncommon/mysterious condition, ensuring as many patients as possible are involved means that the quality of the data will be better, as will the generalisability-the likelihood that the results will apply to other patients with lupus.

There are a number of lupus trials currently recruiting and several more that are under discussion at the moment. One major factor determining whether sponsored trials (for example where a company is testing a new medication) will come to Perth, is whether there is an interested and accessible patient group, and the size of this group.

There is also opportunity for patients to feedback issues that are important to them via communities such as Lupus WA. In addition, there is increasing interest in patient-reported outcome measures, known as PROMs. These PROMS seek to assess the patient’s perspective for example quality of life before and after a new medication and treatment regime is introduced into their health care.

In an ideal world, we would like every patient to be in a research study (of some sort). Given the benefits of participation, we would encourage you to ask your doctors if there are trials that you can participate.

If there are no current suitable trials for you, perhaps consider identifying the issues that are important to you and feeding these back through groups such as Lupus WA. Your feedback is important and it can help define the next set of studies for researchers.

GET INVOLVED IN RESEARCH TRIALS IN AUSTRALIA

Clinical trials registries – for lists of current research studies

http://www.anzctr.org.au/

https://clinicaltrials.gov/

Patient-reported outcomes measures:

https://www.safetyandquality.gov.au/our-work/indicators/patient-reported-outcome-measures/

GET CONNECTED WITH THE PERTH LUPUS REGISTRY AND BIOBANK

The Perth Systemic Lupus Erythematosus Registry and Biobank (PLRB) is a collaboration between the Western Australia Department of Health (WADOH) and the University of Western Australia’s, School of Medicine & Pharmacology. The PLRB is a medical database for SLE patients and records information about Western Australian’s with Systemic Lupus Erythematosus (SLE).

The PLRB will provide a platform for following types of research in Western Australia:

1) Epidemiological characteristics (incidence/prevalence/genetic and environmental risk factors)
2) Cross-sectional biomedical studies from blood samples
3) Longitudinal studies (outcomes, predictors, biomarkers)
4) Interventional studies (participation in clinical trials)

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 PLRB 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 PLRB has been approved by the Human Research Ethics Committee of the Sir Charles Gairdner & Osborne Park Health Care Group.

Benefits to patients

The PLRB is the only research resource that proactively produces research about SLE patients in WA. For the first time, participants of the PLRB are able to proactively support and contribute to medical and scientific research directly related to their disease.
Individually, participants of the PLRB will benefit patients involved in the project and to the wider-community through closer follow-up of their disease, as physicians will have a more detailed medical history and information about the patient’s disease course, leading to better clinical management and patient outcomes. Furthermore, the medical information contained within the PLRB can be used to quickly determine which patients who are eligible to participate in clinical trials that offer new therapeutic treatments.

How can you participate?

For more information about the Perth Lupus Registry and Biobank, please call or email the team on either 61511041 (UWA), 64574072 (SCGH) or warren.raymond@health.wa.gov.au (Research Officer at University of Western Australia) to ask for a Patient Information and Consent Form to be sent to you. Participation is completely voluntary and you can cease to be enrolled in the PLRB at any time.

LUPUS RESEARCH IN WESTERN AUSTRALIA

Links to the following websites will keep you abreast of research being undertaken within Western Australia.

LUPUS RESEARCH WORLDWIDE

Links to the following websites will keep you abreast of research being undertaken further afield worldwide.

COULD YOU HAVE LUPUS?

This simple checklist could help you find out.

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