Australian Epilepsy Project: Your partner in understanding epilepsy

Australian Epilepsy Project (AEP) participants will get access to advanced testing usually only provided through highly specialised epilepsy programs.

Get access to advanced testing

With the Australian Epilepsy Project (AEP) you get access to 3 tests.

MRI scan

A 90 minute advanced imaging scan conducted at an MRI hub, usually only provided through highly specialised epilepsy program and reported by an epilepsy specialised neuroradiologist.

Neuropsychology testing

A 120 minute neuropsychological assessment, conducted online from the comfort of your home. This testing helps us understand your reaction time, attention, language and memory.

Genetics

We will send you a saliva sample kit. This is a genetic test to screen for uncommon genetic conditions and understand if a genetic abnormality is contributing to the cause of your epilepsy.

There are no costs associated with participating in the AEP Study, nor will participants be paid.

Your neurologist will get access to...

AEP report

A comprehensive report of all your AEP tests, sent to your neurologist which helps them understand your unique situation.

Kieran’s experience with AEP

“Regardless of the severity of your condition this is a rare opportunity to be treated by some of the best people in this area of medicine, in the world. Do it.”
Prof. Kwan referred me into the Australian Epilepsy Project (AEP). The AEP provides an opportunity to take part in an important study into epilepsy – it is a privilege to be involved.

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.

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

We have you covered

Ethics approved

This trial has been reviewed and approved by an independent ethics committee.

Encrypted data

All data you provide us is encrypted and stored safely and securely in accordance with security and privacy rules.

National privacy standards

We follow established national privacy standards used in all doctors' offices, hospitals and other businesses where personal medical information is stored. View our privacy policy here.

Your rights

Informed consent before participation

You will receive a detailed outline of the study, including tests, risks and procedures, and given the chance to ask questions before you decide whether to participate.

Withdraw at any time

If you decide to participate in the study and later feel that you no longer wish to be part of it, you may withdraw.

Strictly confidential

Your records relating to this study and any other information received will be kept strictly confidential, except as required by the law.

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

An AEP team member will reach out to you and your neurologist to confirm your eligibility. If eligible, we will contact you to consent you into 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 (2 hrs)

This testing will be conducted via video conferencing.

MRI scan (1.5hrs)

This testing will be done in an AEP Hub near you.

Genetics

We will send you a saliva sample kit that you can return to the AEP.

Baseline interview (1 hr)

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.

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Epilepsy Smart Australia

We are a national partnership working together to bring you the best knowledge and resources about the management of epilepsy.
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Epilepsy Action Australia

Providing support, information and innovative services to those living with and affected by epilepsy across Australia.

FAQs

Here's some Frequently Asked Questions about The Australian Epilepsy Project.

How do I join the AEP?

Please complete the questionnaire here to check if you are eligible to enrol into the AEP.

Is there a cost for participating in the AEP?

No, there are no cost associated with participating in the Project, as the AEP is currently funded by the Australian Government through the Medical Research Future Fund (MRFF).

I am under the age of 18, can I still join the AEP?

Unfortunately to meet the eligibility criteria you need to be over the age of 18 years.

Do I need a neurologist to participate in the AEP?

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.

I don’t live in Australia, can I still join in 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 participant’s living with seizures or volunteers that would be willing to join the control cohort.

Still have questions?

We’re here to help. We’ll be happy to help you with any questions you may have.