Epilepsy education for families

Australian Epilepsy Research Register

The Australian Epilepsy Research Register (AERR) is a database of people who have epilepsy and their family or carers who have given us permission to communicate with them on an ongoing basis for the purpose of social and psychological research.

The Register is an Australia wide project hosted by the Epilepsy Foundation. For more information download our AERR Brochure (PDF 91kb).

This is not a medical or clinical research register, but will likely involve surveys and group discussions designed to find out more about the social consequences of epilepsy. It is important that we gather as many people as possible from right around the country.

All research carried out is confidential and anonymous. There is no obligation to take part in any of the research studies offered. If you would like to participate in the Research Register please click on the link below.

Register for the Australian Epilepsy Research Register

When you register you will receive regular newsletters containing the latest research and be invited to participate in surveys which are conducted every 3 years.

To date, there have been three formal research surveys – Wave 2 (2010), Wave 3 (2010) and Wave 4 (2017).  Download an overview here.

The Wave 2 survey looked at the needs, perceptions and experiences of people living with epilepsy in Australia.
Wave 2 Full Report (PDF 288kb)
Wave 2 Summary Report (PDF 222kb)
Wave 2 Infographic (PDF  291kb)

The Wave 3 survey looked at the social impact of epilepsy
Wave 3 Full Report (PDF 780kb)
Wave 3 Summary Report (PDF 173kb)

The Wave 4 survey explored the access to services and supports that improve quality of life for people with epilepsy and their families.
Wave 4 Summary Report (PDF 538kb)

With each Wave we conduct, we will build an evidence base of the impact of living with epilepsy. The results of our research will help us to provide better services at the Epilepsy Foundation and assist in lobbying government for improved outcomes for Australians living with epilepsy.

Further Information

For further information about the Australian Epilepsy Research Register and how to join, or to request a brochure please ring (03) 8809 0600.

Alternatively, you can email the Research team – research@epilepsyfoundation.org.au