Epilepsy Research Crystal

HOW DO I become an aep participant ?

SPEAK TO YOUR TREATING NEUROLOGIST – Referrals to the AEP are currently only accepted from treating neurologists. Let your neurologist know that you would like to take part in the study. Details for referring can be found on our Clinicians page.

If you do not yet have a neurologist we recommend getting a referral from your GP to a local neurologist.

If you took part in the the AEP pilot study, you can now transition to the Main Study. You will need to take a genetics test, which we will send to you in the mail, and answer a few short questions via Zoom.  To transition to the Main Study contact us at aep-contact@florey.edu.au today.

Your continuation in the project will help assist our research outcomes; helping fast-track diagnosis for future patients. Download the participant's brochure for more information on becoming a particpant.

 

Be part of our control group of volunteers without epilepsy

A control group helps us establish an independent variable in our data, which will help improve AI capability and improve our reporting.

We are currently seeking volunteers to participate. If you are a family member or friend who might be interested in taking part please contact us today. 

Download the Control Group brochure for more details on taking part in the AEP study.

# AustralianEpilepsyProject 

WHAT DOES THE AEP PARTICIPANT JOURNEY LOOK LIKE?

Once you are referred to AEP by your treating neurologist, you will be contacted by your nearest Community Hub.

You will be sent a referral pack, either electronically or hard-copy, that includes information about the project, informed consent form and initial questionnaires.

A Community Hub Coordinator will contact you via telephone or video call to gain verbal or electronic consent to access your medical records, to confirm MRI safety and project eligibility.  Once complete your appointments will be booked.

Your appointments consist of:

  • A baseline epilepsy interview (90min) and cognitive testing (90min) performed via video call
  • Attending a Community Hub MRI facility for MRI scan (60 + 30min)
  • Attending a local community pathology service for blood draw.

Once your neurologist receives your results via the AEP report, you will be invited to an in-person or telehealth consultation.

The AEP report will help your neurologist determine the most effective treatment.

You will next be contacted via phone at 6, 12 and 24 months to collect information about your epilepsy, cognition and quality of life status.

GET SUPPPORT

If you or someone you know is living with epilepsy, there are support groups that may help you navigate this difficult time.

1300 37 45 37