Research
Change starts with people and the research they shape
We support a range of research projects focused on improving understanding, treatment, and quality of life for people living with epilepsy. By connecting people with research opportunities and supporting studies across Australia, we help ensure research is informed by real experience and focused on what matters in everyday life.
Strong research, especially over the long term, is essential for identifying patterns, understanding risks, and improving care. Change happens when research is shaped by the people it is designed to support.
Why Participation Matters
People with epilepsy are central to improving understanding and care through research participation.
While many people achieve good seizure control, around 1 in 3 continue to experience seizures. This highlights the need for ongoing research that reflects real-world challenges and priorities. By taking part, you can help:
- improve future treatments
- increase understanding of epilepsy
- support better outcomes for others
If you’re interested in taking part, visit About Participation to learn more about what to expect and help you make an informed decision.
Research Studies Recruiting Now
Clinical trials contribute to medical knowledge and can make a real difference in future care.
We support and promote a range of current studies and research initiatives.
Australian Pregnancy Register (APR) (National recruitment open) 
The APR is a long-running study investigating the safety of anti-seizure medications during and after pregnancy. Epilepsy Action Australia is the major financial supporter of the APR. This research has already contributed to improved prescribing practices and reduced rates of birth defects.
You may be eligible if you:
- are currently pregnant, or gave birth in the previous 12 months
- are taking anti-seizure medication (with or without epilepsy)
- or have epilepsy and are not currently on medication.
Participation involves brief phone interviews and does not affect your treatment.
Find out more here Australian Pregnancy Register Registration
Pregnancy and Lacosamide (Vimpat) (National recruitment open)
In collaboration with the Australian Pregnancy Register (APR) and UCB Pharma, this study is exploring how levels of the medication lacosamide change during pregnancy.
Participation involves monitoring medication levels during and after pregnancy, with optional breastmilk sampling. Importantly, there are no changes to your current treatment or care.
If you are pregnant or planning pregnancy while taking lacosamide, speak with the APR or your neurologist.
Find out more
Phone: 1800 069 722
Email: [email protected]
Website: www.apr.org.au
Women with Epilepsy Beyond Childbearing Years Survey (National recruitment open)
This research explores the experiences of women with epilepsy during perimenopause, menopause, and beyond.
This short, anonymous survey will:
- capture lived experience
- inform future research priorities
- support the development of better services
Improving Outcomes for Women with Epilepsy in Later Life – WELL Study (National recruitment open)
The University of Queensland are inviting women with epilepsy aged 40 years and above to take part in this study. We are interested in understanding more about the effect of hormones on seizures, bone health, memory and cognition plus quality of life. The study involves the collection of your data over different time points in your life (once a year).
Find out more
Email: [email protected]
Phone: 07 3346 5027
Growing Up Well (National recruitment open)
University of Sydney, Anglia Ruskin University, Epilepsy Action Australia and Asthma Australia, are conducting a longitudinal study of Australians aged 15–25 with epilepsy or asthma to better understand what matters most to young people and the social, financial and educational impacts of chronic illness.
Co-design workshops and interviews will inform the development of a suite of resources hosted on Healthtalk Australia and drive evidence-based changes in policy and practice so young people can live well with chronic illness throughout their lives.
Find out more
Email: [email protected] or [email protected]
Wellbeing Neuro Course for Adults with Epilepsy (National recruitment open)
Macquarie University’s eCentreClinic is now testing free online courses to help Australians with epilepsy learn to manage their mental health and wellbeing including skills for managing:
- stress, anxiety, frustration, and worry
- Low mood, sadness, grief, and depression
- day-to-day cognitive activities.
Find out more
Email: [email protected]
Website: www.ecentreclinic.org
Sodium Selenate Treatment for Temporal Lobe Epilepsy (Recruitment open Vic, NSW, Qld & WA)
Sodium selenate is a potential new disease-modifying treatment for drug-resistant temporal lobe epilepsy (TLE), showing promise in animal models by reducing seizures and improving cognitive and sensorimotor functions. This research project is looking at whether the trial drug, sodium selenate, decreases seizure activity in people with chronic drug-resistant temporal lobe epilepsy.
Participants will be randomly assigned to one of two groups. One group will receive the study drug, the other group will receive a placebo for 6 months and see if the disease-modifying impact continues after cessation of the medication.
Find out more
Email: [email protected]
Telephone: 03 9903 0121
The Keto eCoach Trial (National recruitment open)
Monash University in collaboration with Alfred Health are evaluating if a new digital health model of providing dietary advice can better support people on ketogenic diet therapy for epilepsy.
If you are interested in trying a ketogenic diet and would like to participate in this trial, speak with your neurologist for a referral.
Selection criteria
- aged between 16-60 years
- diagnosed with epilepsy
- experience 2 or more seizures per month
- have good internet connectivity in your area.
The trial will involve 7-10 in-person or telehealth visits with a dietitian over 4-12 months at no cost
to you.
Find out more
Email: [email protected]
Telephone: 03 9903 9449.
The Genetics of Pharmacoresistant Epilepsy (GenPhEp) Study (National recruitment open)
This Queensland University of Technology research study aims to identify the genetic basis of why antiseizure medications (ASM) work for some people but not others. We are asking anyone with a diagnosis of epilepsy taking antiseizure medications to donate a saliva sample and complete the questionnaire to help us further this research and find answers.
Find out more
Email: [email protected]
Telephone: 1800 257 179
Website: Genetics of Epilepsy
Developmental and Epileptic Encephalopathy Research (DEER) Study (National recruitment open)
Professor Ingrid Scheffer and the team at Melbourne University have been studying the genetics of epilepsy for over 30 years. They discovered the first gene for epilepsy in 1995, today more than 1000 genes causing seizures and epilepsy with 900 of these genes causing developmental and epileptic encephalopathies (DEEs).
The DEE Natural History Study brings together experts in neurology, neuropsychology, genetics, translational science, bioinformatics, psychosocial science and health economic research. They want to understand what happens across the lifespan of patients with DEEs. Natural History Studies for DEEs are important to determine if new therapies improve long-term outcomes, such as gene therapies.
Enrolling anyone who has a DEE or a family member with a DEE, is welcome to take part.
What is involved:
- Fill out questionnaires
- Give blood or saliva samples
- Do tests in hospital
- Have a neuropsychology assessment
- Allow us to access your child’s medical records
You will be given an information page that has more detail about what you would need to do.
Find out more or register
Website: geneticepilepsy.org
Email: [email protected]
Phone: +61 3 9035 7344
Australian Epilepsy Project (Recruitment open)
The Australian Epilepsy Project (AEP) is aiming to improve outcomes for people living with epilepsy by fast-tracking time from diagnosis to seizure control.
Through advanced testing (imaging, cognition and genetics) and artificial intelligence, the AEP is creating advanced diagnostic tools, breaking down existing treatment silos, and reducing the uncertainty that characterises epilepsy care today.
Currently a 5-year study, a network roll out of AEP hubs has begun across Australia enabling participants access to the best diagnostic testing, alongside our at-home testing. The AEP will evolve to become a health platform that will transform the delivery of health care in epilepsy, with the potential for application across other brain health conditions.
Find out more
Website: Australian Epilepsy Project | Research Project | The Florey
Finding a Clinical Trial
You can explore current research opportunities through:
- Australian New Zealand Clinical Trials Registry ANZCTR
- U.S. National Institutes of Health (NIH) |
Research Organisations in Australia
A number of leading organisations are advancing epilepsy research across Australia, including:
- Centre for Clinical Research – University of Queensland
Research focused on personalised treatments and the role of biological factors in epilepsy - Epilepsy Research Centre – Austin Health, Melbourne EpilepsyResearch
Collaborative research into the causes, treatment, and outcomes of epilepsy - Neurology and Stroke Research – Clinical Sciences at Monash Health
Including dedicated epilepsy research programs
- The Florey Institute of Neuroscience and Mental Health Advancing Brain Research
One of the world’s leading brain research centres working to improve outcomes in neurological conditions - Epilepsy and Neuropharmacology Research Group – Royal Melbourne Hospital / The University of Melbourne Research Summary
Conducting clinical and laboratory-based studies - Centre for Neuroscience – Flinders University, South Australia FHMRI Neuroscience
Home to specialised neurophysiology research focused on epilepsy
