Why we need research
Thirty percent (30%) of people diagnosed with epilepsy will not achieve seizure control through medications. The other 70% know that epilepsy is more than seizures. The side effects of the anti-epileptic drugs (AEDs) that help to manage seizures can include fatigue, memory loss, poor concentration, issues with vision or speech, coordination, nausea, depression, and more. People living with epilepsy can face stigma and discrimination and the risk of premature death in people with epilepsy is three times higher than in the general population.
Where there is research there is hope
There is so much more to know about epilepsy and our ultimate hope is to find a cure. But in the meantime, we work closely with universities and other research institutions to ensure your voice is used to determine the path of research that brings you the most hope.
Our research partnerships include clinical understanding, psychosocial impacts, health economics and participation and social impacts.
Why join our research register?
You can be part of the solution, you can help us bring hope to people all over Queensland.
Your active participation in all forms of research helps the entire epilepsy ecosystem better serve you. It helps us design better services, and to advocate for system change on your behalf.
By joining our register you will be invited to participate in research that relates to your interests. We also will keep you up to date on research from around the globe bringing hope for a future where everyone has access to effective treatments and deaths are prevented until a cure is found.
Register via the form below.
Current Research Opportunities
The Quality of Life and Employment Impacts of Epilepsy
Would you like to participate in an important research study on the quality of life and employment impacts of epilepsy? It involves completing an online questionnaire taking less than 10 minutes. Participation is completely voluntary, and all information will be anonymous.
The study is run by researchers from the Australian Centre for Health Services Innovation at the Queensland University of Technology.
It is hoped that the knowledge gained from this research will be used to measure the cost-effectiveness of epilepsy treatments so that decision-makers have the evidence required to maximise health benefits from scarce resources.
In the future, this research may inform federal, state, and local government decisions on how resources may be best directed to align with community needs.
This link will take you to a webpage with some further information about the study and what participation would involve.
Participate in seizure cycle research
The aim of this research study is to monitor cycles of seizure risk (such as daily, weekly, monthly and other rhythms), which are very common in epilepsy and can be used to predict the likelihood of future seizures.
Study participants will use the Seer app to record their seizures and medication. They will be given a Fitbit smartwatch to track potential risk factors such as heart rate, stress, sleep quality, and activity.
Social Cognition in Epilepsy
We invite you to take part in a research study that is part of the Queensland Multidisciplinary Initiative for Neurocognitive Disorders Project (The QLD MIND Project).
This research aims to learn more about how epilepsy may affect a range of cognitive abilities, and in particular, social cognition. Social cognition refers to the ability to interpret and make sense of social information in our everyday lives, such as what a friend is thinking or feeling, or why someone is behaving in a particular way. Social cognition is therefore a very important skill in everyday life, and it is hoped that the findings of this research will lead to practical benefits for people with epilepsy in the future.
Participation in the project would involve the completion of a single online assessment of approximately one-hour duration which can be completed at a time or place of your choosing. As a thank you for your participation, at the end of the assessment you will be sent a $20 Coles/Myer eGift Card.
Participation is entirely voluntary. If you do not wish to take part, you do not have to. If you decide to take part and later change your mind, you are free to withdraw at any stage.
If you would like more information or are interested in being part of this study, please contact Tumi Kgolo at email@example.com.
Epilepsy Care in the Genomic Era
Queensland Genomics has funded a clinical project Integrating Epilepsy Genomics into Clinical Care aimed at patients with refractory epilepsy; where the seizures are not able to be controlled by medications.
The project will seek to find answers to two crucial questions for patients: ‘What is the cause of my epilepsy?’ and ‘How can my epilepsy be treated?’ Led by neurologist Associate Professor Lata Vadlamudi, the project team will work to incorporate genomic testing into the healthcare for eligible patients with refractory epilepsy at Royal Brisbane and Women’s Hospital, Queensland Children’s Hospital and Cairns Base Hospital.
With this new technology and the discovery of new genes associated with epilepsy, studies like this will enable a deeper understanding of the causes of epilepsy, which will ultimately drive the search for more effective drug treatments for patients.
The goal of including genomics in epilepsy healthcare is to improve the quality of care for patients and their families, and improve efficiencies in healthcare.
For more information if you are interested in participating, please see the information sheet below.
Mater Research is Looking for People with Focal Epilepsy
Mater Research is looking for people aged 18 and over across Queensland with focal (partial) epilepsy who still have ongoing seizures despite having tried two or more anti-seizure medications.
The study will be conducted over a period of three years with patient participation required for six months and require some medical testing.
If you are interested in participating or would like further information please contact, firstname.lastname@example.org.
Academic achievement in children with epilepsy and maths skills for adults and confidence in epilepsy
Examining academic achievement in children with epilepsy
This study will examine the factors that underpin academic achievement in children. For this study, you will be presented with questions about your child’s academic skills (reading and mathematics), memory, and anxiety.
To participate in this study, you must be the primary caregiver or parent to a child aged of 8 – 17 (inclusive). Your child must have a diagnosis of epilepsy or history of seizures.
Your responses will be kept completely confidential. If you have more than one child with epilepsy in this age range, please select one child only or complete multiple surveys for each child, if you wish.
The study should take you around 10 – 15 minutes to complete. You will go into a draw for a $50 gift card for your participation.
To participate in this research click here.
Maths skills and confidence in epilepsy
We are interested in learning what makes people like or dislike maths. For this study, you will be presented with questions about your memory, confidence in using maths, and also questions about your anxiety.
You will not be asked to perform any calculations or solve any maths problems.
To participate in this study, you must be 18 years or older. You must also have a diagnosis of epilepsy or history of seizures. Your responses will be kept completely confidential.
The study should take you around 20 minutes to complete. You will go into a draw for a $50 gift card for your participation.
To participate in this research click here.
If you have any questions or want more information about this University of Sydney study before or during participation, you can contact the student researcher Belinda Poole at email@example.com or on 0422 739 005.