27 April 2012
The Australian Epilepsy Research Register (AERR) is a database of people who have epilepsy and who have give permission to communicate with them on an ongoing basis for the purpose of social and psychological research.
The primary objective of the register, and research over a period of time, is to learn valuable information about epilepsy, and its social and psychological effects, that can be used to improve the lives of people affected by this condition.
The Research Register was created in 2006 and is an initiative of the Epilepsy Foundation of Victoria. Any person in Australia who has epilepsy or a seizure disorder, or is a carer of a person with epilepsy, can join this register.
The World Health Organization has stated that "the social consequences of epilepsy are often more difficult to overcome than the seizures themselves." Consequences can include difficulties with finding and keeping a job, transport and driving, gaining an education and coping with the attitudes of other people towards epilepsy.
Yet in Australia, there is little reliable research being conducted into these social effects. By gathering detailed evidence of the day-to-day effects of epilepsy on people living with the condition, Epilepsy Australia and its members will be better equipped to meet the service needs of people with epilepsy and to lobby government for a better deal for them.
People who are eligible to join include:
We encourage people to join the register, to provide their views and contribute to the gathering of valuable material.
Joining the register does not put you under any obligation. If at any time you decide you no longer want to continue on the register you are free to request to have your name removed from it.
From time to time researchers at the Epilepsy Foundation of Victoria, as the custodians of the Research Register, will contact you to ask if you would be prepared to answer some questions. This may be done by posting or emailing you a survey, asking you to complete a survey online, or inviting you to discuss a question in an interview or a group discussion.
Researchers are conducting a longitudinal survey, which collects information on how epilepsy impacts on people's lives over a number of years. Your participation in this survey will provide evidence to improve programs and policies for all people with epilepsy in Australia.
You are free to decline to participate at any time.
Putting your name on the register does not mean you have to take part in any research in any way. You may be too busy or you may not feel like participating when we contact you - that's fine. But if you do participate, any information you provide will be confidential, anonymous, safeguarded, and only used for specified research purposes.
By registering as a participant in this ongoing research program you will assist us to construct a clearer picture of the social and psychological effects of living with epilepsy and what supports and services you and others living with epilepsy need to improve your quality of life.
We will also provide regular updates on research findings and, if interested, we can keep you informed of any upcoming events or activities.
From time to time, there may be opportunities for you to meet with other people living with epilepsy who are involved in the Research Register. Importantly, this is an opportunity to be part of a longitudinal study of people living with epilepsy.
Online registration is now available.
For further information please contact Pat McGuirk on 03 98059111.
Epilepsy Australia National Help Line 1300 852 8653
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