Australian Epilepsy Project: Your partner in understanding epilepsy
AEP Participants will get access to advanced testing usually only provided through highly specialised epilepsy programs.
Kieran’s experience with AEP
I found the AEP testing very interesting and enlightening. The staff were very helpful in explaining the process of the tests and it was interesting to learn about what was being examined.
I feel the AEP’s additional diagnostics combined with the very high calibre of physicians and technicians, available here in Melbourne, is fantastic. I am so happy to be a part of the study. It has certainly helped me with understanding my epilepsy.
What's involved?
The Australian Epilepsy Project (AEP) consists of four main testing requirements for participants. The AEP will coordinate all the testing and will be able to help you through the Project.
1.
Genetics
We will send you a saliva sample kit. This is a genetic test to screen for uncommon genetic conditions.
2.
Neuropsychology testing
A 120 minute neuropsychological assessment conducted via video conference.
3.
MRI scan
A 90 minute advanced imaging scan conducted at an MRI hub.
4.
Questionnaires & Follow-ups
We will send you brief online questionnaires and follow-up with you after the MRI and at 6, 12 and 24 months.
There are no costs associated with participating in the AEP Study, nor will participants be paid.
Am I eligible to join the AEP?
Be aged 18 - 67 years
Have a current Medicare number
Be able to safely undergo MRI scan (e.g. not pregnant, no metal implants from surgery or metal braces/dental wires)
Only had one seizure before (or multiple seizures in 24 hours)
Had first seizure in the last six months
Be aged 18 - 67 years
Have a current Medicare number
Be able to safely undergo MRI scan (e.g. not pregnant, no metal implants from surgery or metal braces/dental wires)
Had a seizure in the last six months
Have been diagnosed with epilepsy within the last six months
If you've been prescribed anti-seizure medication, have been on it for six months or less
Be aged 18 - 67 years
Have a current Medicare number
Be able to safely undergo MRI scan (e.g. not pregnant, no metal implants from surgery or metal braces/dental wires)
Had at least one seizure in the last six months
Currently on at least one anti-seizure medication
Tried at least one other anti-seizure medication before
What does the AEP participant journey look like?
Understanding Your Eligibility
We know every epilepsy journey is unique. Discover whether you meet the criteria to join our study and how your participation can have a meaningful impact.
Get referred by your treating neurologist
Referrals to the AEP must be made through your treating neurologists. You can check your eligibility above and we can contact your neurologist to arrange a referral into the AEP.
Contacted by AEP team for eligibility confirmation and consent
A Clinical Trials team member will contact your neurologist to confirm your eligibility. Once confirmed, you will be contacted to consent to the study.
MRI safety screening
We will contact you to complete an MRI safety screening to ensure that you can safely undergo a MRI scan.
Book and attend your appointments
Your appointments consist of:
Neuropsychology testing (120 minutes)
This testing will be conducted via video conferencing.
MRI scan
(90 minutes)
This testing will be done in an AEP Hub near you.
Genetics
(5 minutes)
We will send you a saliva sample kit.
Baseline interview
(60 minutes)
This testing is done via video conferencing.
AEP report sent to your neurologist
Your AEP report will be shared with your neurologist who will discuss your results, at your next appointment.
The AEP report can help your neurologist determine the most effective treatment.
Follow-ups
You will be contacted at 6, 12 and 24 months to collect information about your seizure management, cognition and quality of life.
Ready to join the AEP?
Download the AEP participant brochure
The participant brochure provides more detail about the AEP study.
Our partners and supporters
The Australian Epilepsy Project is made possible through the combined support of The Florey and University of Melbourne.
The Australian Epilepsy Project (AEP) receives funding from the Australian Government under the Medical Research Future Fund.
Get support
If you or someone you know is living with epilepsy, there are support groups that may help you navigate this difficult time.
Epilepsy Smart Australia
Epilepsy Action Australia
FAQs
Here's some Frequently Asked Questions about The Australian Epilepsy Project.
Please complete the questionnaire here to check if you are eligible to join into the AEP.
No, there are no out-of-pocket expenses to participate in the AEP.
Unfortunately to meet the eligibility criteria you need to be over the aged 18-67 years.
Yes, we need to confirm your eligibility with your neurologist to refer you into the AEP.
You can complete the eligibility questionnaire here and we will contact your neurologist to refer you into the AEP.
Unfortunately, you need to live in Australia to participate in the AEP. You can continue to support the Project by following us on our socials as well as recommending the AEP to people living with seizures or volunteers that would be willing to join the control cohort.