Research and current clinical trials - Epilepsy Queensland

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-seizure medications 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

Memory Symptoms in People with Epilepsy

Problems with memory are a common experience for people living with epilepsy.

Researchers from the Royal Brisbane and Women’s Hospital and the University of Queensland are looking to better understand the experiences of people living with epilepsy regarding their memory in everyday life.

Additionally, we want to validate a questionnaire that health professionals can use to assess the memory symptoms experienced by people with epilepsy.

Who can participate?

All adults (aged 18 and over) living with epilepsy are invited to take part. We are keen to hear from you whether you experience problems with your memory or not.

For more information on the study, please contact:

Dr Kate Thompson
P: 0477 627 827
E: kate.thompson1@uqconnect.edu.au

Safety Assessment of a Sub-Scalp EEG Monitor

Call for Participants

The Minder® system is an implantable medical device designed to collect EEG data from people with epilepsy. This study investigates the Minder® system for long-term monitoring of EEG signals and safety in patients with focal or generalized epilepsy.

For more information on the study, please contact:

Delphine Levy-Bencheton
P: 07 3163 8564
E: delphine.levy-bencheton@mater.org.au

or

Katherine Jongebloed
P: 07 3163 2850
E: katherine.jongebloed@mater.org.au

New Clinical Study Enrolling Pregnant Women on Lacosamide

Call for Patient Recruitment

The Raoul Wallenberg Australian Pregnancy Register (APR) and UCB Pharma are looking for women to participate in a study on pregnancy and lacosamide. The researchers want to understand how levels of lacosamide change during pregnancy.

What will it involve?

Your blood will be collected during pregnancy and after the birth of your baby. Samples of breast milk will also be collected (if possible) to check the levels of locasamide in your breast milk.

All other study assessments are part of normal care during pregnancy.

We encourage any person that is currently on lacosamide and who is already pregnant or planning on becoming pregnant to speak with the APR, and their neurologist about this study.

For more information about the study, or to speak with the Australian Pregnancy Register:

Phone: 1800 069 722

Email: apr@mh.org.au

Website: www.apr.org.au

MRTLE2 Study

Do you live with uncontrolled epilepsy? You may be eligible to participate in a clinical study looking into a new treatment for uncontrolled drug-resistant epilepsy.

The MRTLE2 Study is testing a new treatment for epilepsy where a drug to control seizures will be administered through an infusion system directly into the fluid surrounding the brain.

If you would like to contribute to the development of epilepsy treatments by joining the study, contact Mater Research study coordinators Delphine Levy-Bencheton at d.levybencheton@uq.edu.au and Katherine Jongebloed at katherine.jongebloed@mater.org.au

To find more information on the study, click here.

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.

"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

Epilepsy Queensland