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Australian Epilepsy Research Register

The Australian Epilepsy Research Register (AERR) is a database of people who have epilepsy and their 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.

This is not medical or clinical research 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. You can register here.

By registering you are only saying that you might be able to spend a few minutes to a couple of hours of your time over the next year or two. There is no obligation to take part in any of the research studies offered to participants.

The Epilepsy Foundation (EF) is undertaking an applied research program designed to investigate the psychological and social consequences of this brain disorder over many years. The study implemented Wave 3 of the research in 2013/14, find out more about Wave 3 and the results of Wave 2.

With each Wave of the research, we will build an evidence base of the impace of living with epilepsy. This will provide us with the basis to argue for policy reform and to ensure a better understanding of what it is like to live with epilepsy, at all levels of government and in the community.

The World Health Organisation has stated that the “social consequences of epilepsy are often more difficult to overcome than the seizures themselves”. The results of our research will help us provide better services and assist us in lobbying government for improved outcomes for Australians living with epilepsy.

Further information

For further information about the Research Register please ring (03) 8809 0600 or the Epilepsy Helpline on 1300 852 853, for the cost of a local call.  Our brochure Australian Epilepsy Research Register has further information about the register and how to join.

Alternatively, you can email the Australian Epilepsy Research Register.