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

All members of the research register will be invited to complete the Australian Epilepsy Longitudinal Survey (AELS). This survey takes place every three years and captures the experiences and any changes to those experiences of people with epilepsy, their families and carers. The Foundation tracks changes of how epilepsy impacts on the quality of life of people with epilepsy, their families and carers and uses the results to argue for better policies and health services.

Your names and addresses and any other identifying details are not published or used in the results of the research.

When you register you will receive regular newsletters containing the latest research and your contributions to the surveys will help other people living with epilepsy.

Publications from the Australian Epilepsy Longitudinal Survey

To date, there have been three formal research surveys – Wave 2 (2010), Wave 3 (2013) 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)

Peterson C, Walker C, Coleman H 2019 “I hate wasting hospital’s time”: Experiences of emergency department admissions of Australian people with epilepsy. Epilepsy and Behavior, 90, 228-232
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Walker C and Peterson CL 2018 A Sociological approach to resilience in health. International Journal of Evaluation in Clinical Practice: 24: 1285-1290
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Peterson C and Walker C 2018 Are Medicare and Pharmaceutical Benefit Scheme Services Too Costly for Patients? An Epilepsy Based Study. The Australian Journal of Social Issues 53: 386-399.
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Walker C 2018 Commentary on Martin’s What matters in multimorbidity: arguably resilience and personal health experience are central to quality of life and optimizing survival. Journal of Evaluation in Clinical Practice : 24; 1291-1292
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Walker C and Peterson CL 2017 Does being well off help people with epilepsy cope better? The social impact of epilepsy. International Journal of Epilepsy 4: 19-25
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Walker, C. and Peterson C.L. 2017. Multimorbidity: a sociological perspective of systems. Journal of Evaluation in Clinical Practice 23: 209-212
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Walker C. 2015 First steps to systemic change to meet the needs of people with serious long-term illnesses. Patient Experience Journal 2 (2) article 10.
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Bellon, M, Crocker, R, Farnden, J, Gardner, J, Sando, S & Peterson, C. 2015 Family Support Needs Following Acquired Brain Injury Across Metropolitan and Regional/Remote South Australia’ Brain Impairment 16(2), 133-44, DOI.
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Peterson CL, Walker C, Shears G 2014 The social context of anxiety and depression: exploring the role of anxiety and depression in the lives of Australian adults with epilepsy. Epilepsy and Behavior 34: 29-33
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Bellon M, Walker C, Peterson C, Cookson P 2013 The “E” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy and Behavior 27: 251-256
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Bellon M, Walker C, Peterson C (2013) Seizure-related injuries and hospitalizations: Self-report data from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy and Behavior 26: 7-10
Read the article

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