Australian Epilepsy Project promises fewer seizures, fewer deaths and better lives for people living with epilepsy
The Australian Epilepsy Project (AEP) will transform the medical journey of an Australian living with epilepsy, saving them from years of uncertainty, trial and error medication approaches, serious side-effects, and the constant disruption of countless appointments, tests, and referrals.
The AEP will use AI to integrate cutting-edge imaging, cognition and genetics data, and thus provide epilepsy clinicians the answers they need to change lives. Australia has the ability to develop the big data and artificial-intelligence approaches that will transform the delivery of health care, domestically and internationally.
The AEP consists of a group of leading epilepsy researchers and clinicians who have recently submitted their application for Stage 2 of the Australian governments Medical Research Future Fund – Frontiers Program for a $65M grant to provide a national network of community hubs which will provide access to world-leading testing to guide the diagnosis and treatment of epilepsy.
Whilst the global understanding of epilepsy has advanced significantly over the past twenty years, there has been a gap in translating that new knowledge into standard clinical practice, meaning the vast majority of people living with epilepsy are missing out on the advanced testing and insights that can change their lives.
“Access to this standard of epilepsy care is currently a matter of good fortune – where you live, which clinician you see or which referral pathway you go down,” said Prof Graeme Jackson, AEP Chief Investigator, Neurologist and deputy director of The Florey Institute of Neuroscience & Mental Health.
“When we can reduce the arduous and uncertain medical journeys currently faced by those with the condition, their families, carers and clinicians, this is clearly not acceptable. We have to change this,” said Prof Jackson.
A pilot study was run to confirm the suitability of the proposed testing protocol and the efficacy of data movement pipelines and to provide a first-generation AEP Report for evaluation by clinicians.
The results of this pilot study have been used to further refine the AEP which is ready to commence if the Government appointed assessment panel gives the green light to the funding on 30th September 2020.
Once in full flight, the project will give access to all Australians living with epilepsy access to world -leading advance testing across three modalities followed by expert interpretation and integration and AI technologies to produce the AEP Report – a decision support tool to guide accurate diagnosis and optimal treatment selection for treating clinicians and their patients.
“There’s no doubt the AEP will result in fewer seizures, fewer deaths and better lives,” said Professor Jackson.
"This is a once-in-a-lifetime opportunity for Australian researchers and clinicians to effectively rewrite the books for epilepsy diagnosis.”
To help the AEP become a reality and change the lives of people living with epilepsy now and in the future, please sign the digital support board, write to the Health Minister Greg Hunt, and get vocal on social media channels.
Back us, be proud that you did.
For more information and to sign the digital support board please visit: https://epilepsyproject.org.au/
AEP is currently not accepting referrals into the study.
The funding result is expected in late September 2020 after which, if successful, the AEP will commence establishment of community hubs in all states. Referrals into the AEP will be via treating neurologist or clinic once eligibility is confirmed. To stay up to date on latest developments please sign up to our monthly newsletter and keep an eye on our website.
About epilepsy:
Epilepsy is a brain disorder characterised by seizures and cognitive, psychological and social consequences
Epilepsy does not discriminate. It can strike at any age regardless of gender, race or social status
Two and a half million Australians will have a seizure at some point in their lives
For around half of all cases the cause of epilepsy is unknown. Causes include injury to the brain, developmental problems, stroke, infection and genetic abnormalities
Epilepsy is the second most burdensome neurological condition after dementia and accounts for 14.6% of the burden of disease of all neurological conditions
For the 14,000 new cases of epilepsy in 2019-20 in Australia, the lifetime costs of the disease are $22.2 billion
Across the working lifetime of all Australians currently living with epilepsy, an additional 10% of people seizure free equates to 1,600 less deaths, 8,000 fewer Years of Life Lost, 35,000 Productivity Adjusted Life Years gained, and 95,000 Quality Adjusted Life Years gained
Approximately 300 Australians die each year from Sudden Unexpected Death in Epilepsy (SUDEP), epilepsy-related accidents and suicide. The majority of these deaths occur in a person’s prime productive years
People with epilepsy are four times more likely to suffer from stroke, twice as likely to develop cardiovascular disease and three times more likely to suffer from migraines
Epilepsy is called a “hidden disease” because seizures often overshadow its other significant symptoms. These include adverse psychiatric, cognitive, medical and social outcomes which lead to a lower quality of life
