Epilepsy Society of Australia (ESA)
Australian Epilepsy Research Register (Epilepsy Foundation of Victoria)
The Australian Twin Registry
Cognitive Behavioural Therapy Trial
The ‘Survey of Seizure Experience’ Study
- 'Subjective well-being in Australian Men after Neurosurgery for Adult On-set Epileptic Seizures' Study
Do you live in New South Wales, Queensland, South Australia or Victoria?
Have a confirmed diagnosis of epilepsy for more than 5 years?
Aged between 18 and 70 years?
Find out if you are suitable for this study through the online screener that quickly helps you find out if you might be eligible for this clinical trial.
If you are accepted into this Study, all medication is free-of-charge. You may also receive advanced medical check-ups and tests including blood tests and ECGs by doctors and medical professionals that are also free-of-charge.
In order to determine if you prequalify for this clinical study testing a novel investigational drug for the treatment of epilepsy you will be asked some personal questions about your health and present condition. You may stop answering questions at any time and you do not have to answer any questions that make you feel uncomfortable.
“EPILEPSY AND IDENTITY”
Participants must be +18years old, have been diagnosed with epilepsy for longer than 12 months and cannot have any other chronic illness.
Possible benefit to the epilepsy community includes gaining knowledge of the impact epilepsy has on the sense of identity, which may help to instigate the provision of more appropriate services at critical points post-diagnosis to better support individuals mentally and emotionally through their illness journey.
If you are interested please contact the researcher Kim Bishop on email@example.com for an Information Sheet. There is no obligation to proceed at any point or consequence should you choose not to proceed at any point.
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.
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/research/australian_epilepsy_research_register or call (03) 8809 0600
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
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.
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)
Ethics Approval: Protocol No X11-0127 & HREC/11/RPAH/181
'Subjective well-being in Australian Men after Neurosurgery for Adult On-set Epileptic Seizures' Study
CALLING ALL MEN WHO HAVE UNDERGONE EPILEPSY SURGERY
• 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:
HREC Ethics Approval No: 14329
'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:
Ethics Approval Ref. Nos:
Recent research has confirmed that adults on medication for epilepsy were at risk of lower bone mineral density with increased risk of fractures due to simple injuries. This risk was increased for those adults who started taking medication for epilepsy in childhood.
Researchers are seeking children and young people who are:
• Aged between 5-18 years
• Same-sex siblings within 2 years of age
• Taking medication for epilepsy (> 12 months) and their sibling/twin is not
• Preferably based in Melbourne
The aim is to look at bone health, muscle strength and balance to see if there are any differences between the siblings or twins. It is hoped that this research will demonstrate if this is an issue for young people, how young people on medication for epilepsy can maximise their bone health and reduce their future risk of broken bones.
For further information about this study please contact:
Ph: (03) 8344 0643
Bone health in children and young people with epilepsy treated with anti epileptic drugs
Royal Children’s Hospital HREC REF. No. 32078A