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Aussies spearhead world-first international eye lymphoma registry

Flinders University and the Queensland Eye Institute Foundation (QEIF) have formed a new partnership to create a world-first international registry for lymphoma in the eye.

Flinders strategic professor in eye and vision health Professor Justine Smith and QEIF CEO Professor Mark Radford are leading the project to collect key information about the rare eye cancer aimed at better understanding the effectiveness of various treatments.

Lymphoma – a blood cancer – rarely occurs inside the eye, but can affect the retina and other tissues at the back of the eye critical for vision.

“Lymphoma of the eye causes distressing symptoms, including loss of vision and severe floaters. Sadly, the largest problem for almost all patients is that this cancer usually progresses to involve the brain,” Smith said.

According to Smith and Radford, current treatments include chemotherapy, radiotherapy and even bone marrow transplantation. Once the brain is affected, many patients cannot be cured.

The latest data from the Australian Cancer Database indicates only one-third of patients with lymphoma of the eye live for five years once the cancer spreads to the brain.

With it not being possible to run clinical trials to identify best treatments – as lymphoma of the eye affects less than one person per million Australians – the researchers state the alternative approach to collecting medical information and improving treatments is a registry.

They said the information collected through a registry can be used to understand general trends in outcomes of different treatments. Unlike clinical trials, the registry approach also provides information about medical practice in the real world.

Smith and Radford’s international registry will be the first of its kind aimed at understanding the effectiveness of various treatments for the eye cancer.

The project is being funded by QEIF’s partner organisation the South Bank Day Hospital and an Innovation Connections Grant funded by the Australian Department of Industry, Science, Energy and Resources.

Brain lymphoma rates on the rise 

Smith has also recently been involved in a first of its kind Australian study that revealed rates of brain lymphoma have quadrupled since the 1980s in this country with only 33% of people surviving five years after receiving this diagnosis.

The national study used data collected by the Australian Cancer Database across four decades (1984-2014).

Brain lymphoma is a Non-Hodgkin lymphoma in which cancer cells from lymph tissue form in the brain or spinal cord. As the human eye is connected to the brain, the lymphoma can also start in the eye (retinal lymphoma) and later spread to the brain.

Smith said it was the first time a study had assessed comprehensive data on brain lymphoma diagnosis and survival rates across a span of three decades in Australia.

“The increase in cancer that we have reported cannot be explained on the basis of an aging population or improved diagnostic and classification tools, and this finding definitely deserves more investigation,” she said.

“While it is fortunate that this cancer is rare, being diagnosed with a rare disease poses many challenges for the patient, their support network and the healthcare team, as treatment information is often more limited.”

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