Connecting people with brain cancer to research
People with brain cancer want better treatments – and many want to help researchers find them. But taking part in research hasn’t always been easy.
Brain Cancer Australia’s Opt Me In (OMI) Platform makes it easier for eligible patients to self-enrol and consent to research studies. It also gives researchers the infrastructure to run faster, more cost-effective, data-driven trials and studies.
By connecting participating patients with the Australian Brain Cancer Registry, Opt Me In will help researchers answer important questions about treatment and care – and understand how new therapies affect people’s lives over time.
The first study, Vorasidenib Outcomes: Real-world Analysis (VORA), is now open to eligible patients. VORA will track the long-term outcomes of people receiving vorasidenib for an IDH-mutant glioma, helping researchers understand its impact on quality of life and overall survival.
For more information about Opt Me In and the VORA study, please email info@braincanceraustralia.org.
“Now that it’s live, we can use this platform to get the answers to many questions – and in less time and at less cost than with traditional clinical trials. This will provide evidence to improve care and speed up access to new treatments.”
Robyn Leonard OAM, Founder and Director, Brain Cancer Australia
Why Opt Me In matters
Traditional clinical trials can be costly and time-consuming. Even when a treatment becomes available, important questions can remain about its long-term impact on patients.
Opt Me In brings together patient participation and linked health data to help close these gaps.
The platform will:
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Make participation easier, allowing eligible patients to self-enrol and consent to studies online.
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Support faster, more cost-effective research, using existing health data captured through the Australian Brain Cancer Registry.
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Build evidence about long-term outcomes, helping researchers understand how treatments affect survival, quality of life and care.
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Create opportunities for further research, with additional trials studies to be introduced over time.
"We need to understand what new treatments mean for patients over the long term — how they affect quality of life, if there are unintended side effects and whether it helps patients live longer. The OMI Platform will enable this."
Professor Lindy Jeffree, Chair, Brain Cancer Australia National ConsortiumIntroducing VORA: the first Opt Me In study
The platform’s first study, Vorasidenib Outcomes: Real-world Analysis (VORA), will examine the long-term outcomes of people receiving vorasidenib for an IDH-mutant glioma.
VORA will help researchers understand how the treatment affects patients over time, including their quality of life, treatment outcomes and overall survival.
Data analysis will begin in Queensland, followed by New South Wales, before expanding to other states.
For more information about Opt Me In and the VORA study, please email info@braincanceraustralia.org.
