Research

Epilepsy Queensland works proactively with universities and other research institutions to ensure people living with epilepsy have access to research.

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

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.

If you would like to find out more about this ongoing study visit their website or contact the lead investigator, Dr Pip Karoly via email cycles-study@unimelb.edu.au.

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 t.kgolo@uqconnect.edu.au

 

 

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, epilepsy.research@mater.uq.edu.au.

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 belinda.poole@sydney.edu.au or on 0422 739 005. 

Epilepsy and Language Study

Discovering the Link Between Epilepsy and Language

Researchers from the Mater Hospital Advanced Epilepsy Unit, University of Queensland and Queensland University of Technology are embarking on a joint study to investigate the link between epilepsy and language.

Epilepsy affects more than 250,000 Australians. For the majority of people, epilepsy can be managed with medication alone. However, one third of patients will have epilepsy that is resistant to standard treatment. In Queensland, over 16,000 people with epilepsy continue to have frequent seizures.

Researchers are hoping to gain a better understanding of the impact that ongoing seizures might have on the brain, and on language. They also want to investigate whether these impacts might differ based on where in the brain seizures are focussed (e.g., frontal lobe, temporal lobe). Researchers need people with different types of epilepsy to try and under this.

Understanding the possible impacts of ongoing seizures on the brain and on language could result in improved treatment for people with epilepsy, as well as clearer information for people with epilepsy and their families. A better understanding of the structure and function of regions of the brain that are important for language may also lead to improved treatment for people with other conditions (e.g., stroke and dementia) that can impact similar regions.

Eligible participants will be asked to attend a testing session at the Mater Hospital Brisbane to complete assessments of language and cognition. This session will take approximately 2-3 hours.

Researchers are seeking men and women with epilepsy aged between 18-85 who are right-handed and speak English as a first language. For more information, please contact Aoife Reardon, The University of Queensland on (07) 3346 6110 or a.reardon@uq.edu.au

 

Epilepsy MRI Language Mapping Study

Discovering the Link between Epilepsy and Language

Researchers from the Mater Hospital Advanced Epilepsy Unit, University of Queensland and Queensland University of Technology are embarking on a joint study to investigate the link between epilepsy and language.

Epilepsy affects more than 250,000 Australians. For the majority of people, epilepsy can be managed with medication alone. However, one third of people will have epilepsy that is resistant to standard treatment, which may require surgery.

Before surgery, patients will have a number of tests, including an MRI scan. This helps plan for safe removal of the region causing seizures, while minimising the risk of damage to other areas, including those that are important for language. However, patients who undergo the same surgery can experience varying degrees of language difficulty following surgery.

As our understanding of the impact that ongoing seizures might have on the brain and on language is limited, researchers want to investigate this further. They are also hoping to identify how MRI can be best used to assess language function in people with epilepsy, when planning for surgery.

This research could result in improved treatment for people with epilepsy, and lead to clearer information about the risks and benefits of surgery for people with epilepsy and their families. It could also lead to improved treatment for people with other conditions that affect similar regions of the brain (e.g., stroke, dementia, brain tumours, etc.).

Participants will be asked to attend two MRI scanning sessions at the Herston Imaging Research Facility at the Royal Brisbane and Women’s Hospital approximately three months apart. Each session will take approximately 60 minutes.

Researchers are seeking men and women with and without epilepsy aged between 25-65 who are right-handed and speak English as a first language. For more information please contact Aoife Reardon, The University of Queensland on (07) 3346 6110 or a.reardon@uq.edu.au

 

 

"Person with epilepsy" or "Epileptic person?"

Should you be addressed as a person/patient with epilepsy or an epileptic person/patient? Do you think this varies depending on who is
addressing you: i.e. friend, professional, media? For more information and to have your say, click here.

If you would like further information please contact Dr Lisa Grech on 0410 947 444 or lisa.grech@monash.edu.

  • Register your interest