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Other Research

Epilepsy Society of Australia (ESA)

The Epilepsy Society of Australia is a professional organisation for clinicians, scientists and technologists involved in the diagnosis, treatment and research of epilepsy in Australia.

Medical research into the causes, consequences and treatments of epilepsy is conducted by ESA members at many Australian hospitals, universities and research institutes. The ESA seeks applications from Australian research groups for funding, reviews applications from research groups for scientific quality and feasibility, assesses the track record of research groups applying for funding, and distributes ESA research funds to worthy projects and groups. The ESA fosters research through provision of scholarships and hosting of its Annual Scientific Meeting.

The ESA also provides seed funding and in-kind support for training initiatives in Australia and Asia-Oceania, such as the Australian Pregnancy Register, the East Timor Epilepsy Project and the SEISMIC Project.

http://www.epilepsy-society.org.au/pages/research.php

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Epilepsy Foundation of Victoria (EFV)

A Socio-economic Longitudinal Study of Epilepsy

The Epilepsy Foundation of Victoria established a Research Participant Register in 2006 with the aim of gathering valuable information on living with epilepsy. This register invites people with epilepsy and their carers who are interested in participating in psychosocial research to register their names on a confidential database.

The longitudinal project aims to help in understanding the impact of living with epilepsy by describing the needs, perceptions and experience of people living with epilepsy. This research offers a unique opportunity to collect information over a period of the person’s life and give a voice to what it means to live with epilepsy, and ultimately provide an evidence base to argue for improved policies and services at the government and community levels.

This longitudinal study is expected to continue for up to 10 years, on an annual basis, documenting the changing pattern of the true impact of living with epilepsy and establishing crucial information with regard to issues including stigma, education, employment, social support, quality of life, mental health status, physical health cost and treatments.

The project has received human research ethics approval from Deakin University in Victoria.

For more information or to join the Research Participant Register
The Epilepsy Foundation of Victoria invites people living with epilepsy and their families in all states and territories in Australia to join the Research Participant Register. People who join are not obligated in any way to take part in any research offered to them.

To join the register, visit the Epilepsy Foundation of Victoria’s website:
http://www.epinet.org.au/articles/social_research_projects or call (03) 9805 9111

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The Australia Twin Registry

The Australian Twin Registry (ATR) is a not-for-profit organisation, funded by  the federal government, which facilitates and supports medical and scientific studies that involve the participation of twin pairs (or multiple births) to help researchers study the impact of genetic and environmental factors on health, as well as the treatment and prevention of disease in a unique way. 

With more than 31,000 pairs of twins registered, this is the largest volunteer registry of its kind in the world.

Approved projects must satisfy ethical guidelines and be of significant value to the area of proposed research.  Information concerning individuals on the Registry is strictly confidential; personal details will not be given out without prior consent.

New studies commence every year and twins are contacted whenever they might be appropriate participants for a study.  Involvement in a study is always voluntary and can be withdrawn at any stage. 

This register is particularly important for research into the genetics of epilepsy and all twins are strongly encouraged to register.

The Australian Twin Registry accepts twins and people from multiple births (HOM) of all types, of any age and in any state of health.  

To register, or find out more, please call Freecall 1800 037 021 or register online  http://www.twins.org.au/index.php?page=register

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Cognitive Behavioural Therapy Trial

 

Do you have epilepsy?
Would you like to try to improve your quality of life?

If you answer yes to the above questions, then you are invited to take part in this research study. This study aims to investigate the effectiveness of a psychological treatment to improve quality of life and mood in people with epilepsy.

Participation in this study will not cost you anything.

Professor Louise Sharpe (Director of Clinical Research, School of Psychology, The University of Sydney) and Milena Gandy (Doctorate of Clinical Psychology and Doctor of Philosophy student, The University of Sydney) are the investigators who are conducting this study.

Recruitment for this research study has now closed. Results of the study will be posted when published. Thanks to all those who participated.

 

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The 'Survey of Seizure Experience' Study

Are you over the age of 18?
Diagnosed with epilepsy more than 12 months ago?
Willing to share your experience of seizures?

If you answer YES to the above questions, then you are invited to take part in this online research survey to help us better understand how adults with epilepsy experience seizures. It is hoped that the results of this survey will lead to a better understanding of people’s experience with epilepsy and contribute to improved care for people with seizure disorders.

This self-report survey is looking at non-medical factors that may be associated with seizure onset, how people manage their epilepsy and how much control people feel they have over their seizure activity.

To participation in this study you need to:   
• be over the age of 18 years
• have been diagnosed with epilepsy, by a doctor, more than 12 months ago
• have access to the internet

The online survey is anonymous.
You do not have to enter your name or email address.
It will take you about 15 minutes to complete.

To access the survey follow the link to www.surveymonkey.com/s/5H7DBLC 

If you have any questions about this survey please contact:
Professor Tracy Trevorrow
Principal Investigator (Professor of Psychology, Chaminade University of Honolulu) 
bhs-cmp@chaminade.edu

Ethics Approval: Protocol No X11-0127 & HREC/11/RPAH/181

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'Subjective well-being in Australian Men after Neurosurgery for Adult On-set Epileptic Seizures' Study

 

CALLING ALL MEN WHO HAVE UNDERGONE EPILEPSY SURGERY

If you:
•  are a male over 21 years
•  developed epilepsy after you turned 18 years
•  have undergone epilepsy surgery
•  understand and speak English

You are just who we are looking for!

This research study aims to develop stronger knowledge of the circumstances that men often encounter in all social environments following surgery to reduce adult onset epileptic seizures related to the period of emotional recovery following surgery.

The findings will contribute to understand the difficulties that men, who have undergone neurosurgery for adult on-set epileptic seizures, may experience when re-establishing themselves in all relevant social environments. It will also verify the need for providing necessary rehabilitation to all patients, and those closest to them, post surgery.

If you would like to participate in this study or would like more information please contact:

Martin Raffaele 
Email: mraf4695@uni.sydney.edu.au  
Mobile: 0422 582 902
OR
Professor Elias Mpofu
Head of Discipline of Rehabilitation Counselling Sydney University 
Email: elias.mpofu@sydney.edu.au

HREC Ethics Approval No: 14329

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'Genetics of Epilepsy: A Twin Approach' Study

Twins teach us about seizures and epilepsy: Learning from one or two?

Epilepsy research has allowed us to start to understand the genetics of epilepsy and to discover some epilepsy genes. There is still much to be learnt about the genetic causes of epilepsy.

Identical twins have the same genetic makeup and we expect both identical twins to have seizures if it were due to genetic causes. Earlier studies using twins have shown this to be correct in about 70% of cases. An important question that follows, is why the other 30% have only one of the identical twins affected? We hope that by carefully studying identical twins with epilepsy important answers will be found. 

Studying non-identical twins is also important so we can better understand the different types of epilepsy. This research will help us better understand what causes epilepsy, which will lead to better diagnosis and treatment for this condition.

We are seeking people who:

• Are twin pairs
• Have a history of seizures in one or both twins
• Have a history of convulsions associated with a fever in one or both twins
• Are aged over 5 years

If you would be interested in learning more about this research and what it involves contact: 

Dr Lata Vadlamudi
Neurologist, Royal Brisbane and Women’s Hospital
Phone: (07) 3346 5155 (Tuesday and Thursday)
Mobile: 0438 861 166

Ethics Approval Ref. Nos: HREC/09/QRBW/289, HREC/09/QRCH/99, 1615C

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