SOCIAL RESEARCH PROJECTS
The Longitudinal Survey
What is the Australian Epilepsy Research Register?
The Australian Epilepsy Research Register (AERR) is a database of people who have epilepsy and who have given us permission to communicate with them on an ongoing basis for the purpose of social and psychological research.
Who can join the register?
People who are eligible include:
· Individuals over the age of 18 years of age who have epilepsy or a seizure disorder
· Parents and guardians of children with epilepsy or seizure disorder
· Family members, friends or paid carers who look after someone with epilepsy or a seizure disorder
We encourage people to join the register, to provide their views and contribute to the gathering of valuable information.
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.
Please complete this form if you would like to join the Australian Epilepsy Research Register (AERR). By joining the register, you give permission to contact you from time to time to conduct research into your experiences of living with epilepsy or caring for someone living with epilepsy.
Survey Highlights
- Ethics approval from Deakin University’s Human Research Ethics Committee received.
- 702 research register participants sent a questionnaire package, containing an introductory letter, newsletter, plain language statement, the survey and a reply paid envelope.
- Of the 702 people initially contacted 43 were not contactable (changed address or deceased), 27 asked to be removed from the register and 11 people declined participation.
- 346 of the remaining 621 people who received the survey responded, giving a 55.7% response rate.
- 71.1% (246) were people with epilepsy with the remainder representing those who completed the questionnaire on behalf of a person with epilepsy, or were carers or family members.
- Data entry and analysis is being carried out with an initial report expected later in the year.
Use of the Research
With the information gathered from the study, the epilepsy service providers in Australia will be better placed to assist people with epilepsy, other service providers and government to make better decisions about the health and social supports that people living with epilepsy require. It will also help to raise awareness of the challenges people
For further information please do not hesitate to contact the Dr Christine Walker on (03) 9805 9111 or email research@epilepsy.asn.au
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Nyah was born with Sturge Weber syndrome, it usually presents with a port wine birthmark and neurological complications. Seizures, often unpredictable and prolonged usually begin early in life.
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