The importance of seizure-free control participants in the Australian Epilepsy Project

December 18, 2023
Associate Professor Heath Pardoe

Epilepsy is associated with subtle changes in brain structure and cognitive functions such as language and memory. These changes are often informative for diagnosis and predicting health outcomes in people with epilepsy. 

At the Australian Epilepsy Project (AEP), we are mapping brain structure and cognition using advanced magnetic resonance imaging and teleneuropsychology approaches. To fully leverage the benefits of these advanced techniques and identify subtle brain changes early in the course of an individual’s epilepsy, it is important to determine the range of values that are encountered in healthy non-epilepsy subjects. 

This is why the AEP is enrolling healthy, seizure-free study participants. These control participants will allow us to establish baseline measurements derived from MRI scanning and cognitive testing. When these measurements are then obtained in AEP participants with epilepsy, we will be able to identify brain changes that are important for epilepsy diagnosis and treatment. 

For example, changes in brain structure in specific areas of the brain may indicate where seizures are coming from and assist in treatment planning. Subtle changes in language or memory testing may provide further information about where in the brain seizures originate, and how treatment for epilepsy may affect a participant’s ability to maintain a healthy, productive life. 

Seizure-free control participants are also important to allow us to carry out study activities across Australia. The AEP is a multi-centre study, with imaging sites currently established in Victoria, South Australia, Queensland and New South Wales. The use of a number of MRI scanners allows the AEP to increase study enrolment and obtain results that can be used across the diverse Australian population. 

MRI scans obtained from each scanner are slightly different, and these differences yield measurements that vary by study site. The use of seizure-free control participants will allow us to correct for these site-related differences and combine MRI scans from each imaging centre into a single large-scale epilepsy imaging dataset.

Healthy seizure-free control participants are a crucial part of large, multi-site studies like the Australian Epilepsy Project. Data collected from these seizure-free participants allow us to identify subtle changes in brain structure, function and cognition in people living with epilepsy. Recruitment of healthy seizure-free controls will assist AEP investigators in developing cutting-edge techniques for improved epilepsy diagnosis and treatment planning.  

To volunteer for the AEP’s control group, click here.

AEP Participant: Kylie Staats shares her story

Hi, my name is Kylie Staats, I’m 37 years old and I have had epilepsy for almost my entire life. I had my first seizure when I was four years old, and at that time, nobody knew why it was happening.

AEP Volunteer: Luke Wolfe

Meet Luke Wolfe, a recent volunteer for the AEP’s control group. Earlier this year, his close friend experienced her first seizure and was subsequently diagnosed with epilepsy. Watching her navigate this new diagnosis and its impact on her life left him wondering if there was a more proactive way he could help, other than offering care and support.

Meet the team: Seiko Bhungane

Meet Seiko, a Clinical Trials Assistant with the Australian Epilepsy Project. As a member of the Clinical Trials team, Seiko is responsible for the recruitment of both AEP participants and control group volunteers as well as the follow-up interviews with our three participant cohorts (first seizure, newly diagnosed and drug-resistant). “The first call you get from the AEP and the last one, is done by my team and I.”