Key points
- Epilepsy is the most common serious brain disorder globally. One in 25 Australians will be diagnosed with epilepsy at some stage in their lives.
- The Australian Epilepsy Project (AEP) is setting a new standard of care that simplifies the journey from diagnosis to treatment.
- Will Campbell was referred to the AEP where a small structural abnormality in his brain that was driving his seizures was identified, leading to successful surgery that stopped his seizures.
Pioneering a new model of care for epilepsy patients
Imagine waiting 20 years for an accurate diagnosis of a condition affecting almost every aspect of your life.
For many people with epilepsy, this has been the stark reality.
But a groundbreaking research project that utilises artificial intelligence to integrate advanced brain imaging, genetic testing and clinical information is transforming the diagnostic and treatment journey for people with this common neurological condition.
Australian Epilepsy Project (AEP) lead, Professor Graeme Jackson, said the team is pioneering a new model of care for epilepsy patients to provide rapid access to advanced diagnostic tools.
Professor Jackson, Florey Deputy Director, said predicting seizure recurrence, medication effectiveness, and patient prognosis is currently challenging.
If you ask your neurologist after you have had your first seizure how likely it is that you are going to have another, they may as well flip a coin for the answer.
It’s also difficult to predict a person’s response to anti- seizure medications. As a result, patients often endure a lengthy trial-and-error approach to treatment, experiencing continued seizures and medication side effects.
The aim of the AEP is to improve the lives of people with epilepsy through building a ‘digital twin’ of each patient’s brain.
The AEP provides the treating neurologist with in-depth information about their patient, including more detailed images of the brain, visualising networks of neural communication, and providing new insights into brain function in epilepsy.
In a subset of patients, the approach will streamline the identification of abnormalities in brain structure that may benefit from surgery. This is important, as the average time from seizure onset to surgical treatment in these patients is 22 years.
“If your child has their first seizure, you wouldn’t imagine that it might take more than 20 years for the cause to be identified,” Professor Jackson said.
“The AEP aims to change this by setting a new standard of care that simplifies the journey from diagnosis to treatment.”
Will’s story
For patients like Will Campbell, the project has been life-changing.
Throughout his teen years Will experienced subtle symptoms like dizziness, a metallic taste in his mouth and sudden emotional swings – all features of temporal lobe epilepsy.
Will’s epilepsy went undiagnosed for years. “Over time, my symptoms changed in frequency, intensity and nature, and I developed episodes with an overwhelming sense of déjà vu, a feeling of dread, and a narrowing of my vision,” Will said.
He also had periods where his short-term memory was impaired.
Suddenly I’d find myself in a different room of the house and I didn’t know how I had got there.
One day, a friend observed him having a seizure and suggested that he see a specialist.
When he was seen by epilepsy specialist, Dr Moksh Sethi, Will received a swift diagnosis, with the assistance of the AEP.
“Unfortunately, it is not uncommon for people’s symptoms not to be recognised for several years,” Dr Sethi said.
“Seizures do not always involve collapse and a loss of consciousness.”
Fortunately for Will, Dr Sethi had access to a range of advanced diagnostic tests through the AEP that are not routinely available.
Dr Sethi said medication was unable to control Will’s symptoms, but thankfully, AEP brain imaging at The Florey identified a small structural abnormality in Will’s brain that was driving his seizures.
Around one in ten of my patients referred to the AEP have been found to have critical brain lesions that could not be seen in their prior brain scans. These have been uncovered thanks to the project, providing patients with a surgical treatment option.”
Neurosurgeons successfully removed the damaged section of Will’s brain in 2024.
Before the surgery, he was experiencing seizures up to 5 times a day. While he remains on medication, he is currently seizure-free.
Will’s diagnosis has given him renewed optimism about his future, and he hopes to start a medical degree, inspired by his own experience.
Epilepsy is the most common serious brain disorder globally. One in 25 Australians will be diagnosed with epilepsy at some stage in their lives.
Professor Jackson said eligible patients, like Will, can sign up to the project directly and be connected to local neurologists, or clinicians can refer their patients to the AEP.
The project is demonstrating that it’s possible to deliver most of this world-class healthcare in the home, with saliva genetic tests arriving by post, and neuropsychology testing completed online.
Patients then attend any one of a number of specialist epilepsy hubs for advanced imaging scans, which are interpreted by a neuroradiologist with special expertise in epilepsy.
“The AEP is pioneering the healthcare of the future,” he said.
If we want to give Australians the best chance of reducing or eliminating their seizures, we need to change our ‘bricks and mortar’ health system and move away from postcode medicine, where the treatment you receive depends on where you live, and shift into the digital and data era.
Importantly, Professor Jackson said the new model of care the AEP is developing has the potential to transform care for a wide range of common neurological conditions.
