Australia has the second highest incidence of mesothelioma in the world, with only the United Kingdom reporting more cases of the deadly asbestos-related disease. In the interest of gaining a greater understanding of which treatments patients access and what outcomes are provided, one of the leading universities in the country has announced that they will be creating an outcomes registry.
Outcome Registry Will Complement Australian Mesothelioma Registry
Because malignant mesothelioma is such a rare disease, gathering statistical data from diagnosed patients is essential to setting future treatment goals. This data not only includes clinical data around diagnosis itself, but also the types of treatments provided, the outcomes that they yield, and patient deaths.
While the Australian Mesothelioma Registry already captures much of that information, as well as data on where and how each patient was exposed, it does not track the care that patients choose. The establishment of a clinical quality registry at Monash University will close that loop.
Mesothelioma Registry Has Long Been a Goal for Monash University
According to Dr. Susan Harden, a Senior Research Fellow in the Department of Chronic Disease and Aging, the establishment of the new mesothelioma registry has long been a goal for researchers at Monash. “The registry will allow us to understand who accesses which therapies and what, if any, barriers to treatment exist. For instance, it may be that regional patients find it difficult to travel to metropolitan hospitals for specialist treatment. Or possibly the side effect profile of some treatments acts as a deterrent. That’s just speculation now, but when the registry begins collecting data, we’ll be able to identify any unwarranted variation and then we can do something about it.”
Dr. Harden will be leading the registry. She says, “Treatment with immunotherapy has recently been shown to improve survival for this rare cancer and currently we don’t know how many people diagnosed with mesothelioma have access to this across Victoria or how it impacts their quality of life. It’s my hope that key indicators collected by this registry will provide evidence of how well the current care systems work, and identify any areas where we can improve.”
If you or someone you love has been diagnosed with malignant mesothelioma, you understand how important quality information is to obtaining the best possible outcomes. For more information and access to resources, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.
