The global project, co-funded by Flinders Foundation and the Queensland Eye Institute Foundation, aims to collect information from patients with vitreoretinal lymphoma to improve medical care and results.  

This cancer occurs inside the eye, but is difficult to diagnose and can affect the retina and other tissues at the back of the eye critical for vision.  

Vitreoretinal lymphoma affects less than one Australian per million, but is usually aggressive and often progresses to the brain.  

Current treatment plans vary and include chemotherapy, radiotherapy and bone marrow transplantation, but the risk of death from the disease is high.  

Data from the Australian Cancer Database indicates only one-third of patients with the disease live for five years once the cancer spreads to the brain. 

Professor of Eye and Vision Health at Flinders University, Professor Justine Smith, said the research would advance clinical practice worldwide. 

“We are using a novel registry tool to collect diagnostic, treatment and outcomes data internationally,” said Professor Smith, who formed and chaired an international steering committee of ophthalmologists caring for patients with vitreoretinal lymphoma. 

“We have established the registry on an online platform to collect anonymous medical information from individuals around the world about their cancer and their medical care. 

“The grant will allow researchers to expand the global network of ophthalmologists contributing patient data to the registry and provide data quality and assurance monitoring by research staff based at Flinders University.” 

Professor Smith said it was difficult to study rare cancers because robust clinical trials were not possible with small numbers of patients. 

“This creates a big challenge for researchers and treating doctors to learn more about how rare cancers develop and what can be done to improve medical care and outcomes for patients,” she said. 

“This points to a need for real-world information on vitreoretinal lymphoma diagnosis and treatment practices, and the impact on eyesight and survival.” 

Information from the global patient cohort will be used to assess how the eye cancer develops with today’s testing and treatments, to improve life expectancy and quality of life for those affected.