Current Research Projects

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Current and Ongoing Research Projects

Below are some important long term research projects. Long term research can provide important information about disease patterns, risk factors, outcomes of treatment or health interventions, and best practice.

If you are interested in participating in clinical trials and research, go to Participate in Research

Australian Pregnancy Register: currently recruiting

The Australian Pregnancy Register (APR) is  an independent research project into the long-term effects and safety of anti-seizure medications on the mother and child during and after pregnancy. Epilepsy Action is a major partner and supporter of the APR.

This register is designed to bridge current knowledge gaps about epilepsy medication and has already identified some issues that has resulted in a change in prescribing practices and a reduced rate of birth defects.


To be eligible to participate, you need to answer yes to two of the following three questions. Are you:

  • Planning a pregnancy, currently pregnant or have recently given birth?
  • Taking an antiseizure medication with or without a diagnosis of epilepsy?
  • Not taking antiseizure medication but have been diagnosed with epilepsy?

The aim is to have as many women as possible enrol to provide a broad base of information. This is an observational study consisting of one to four brief telephone interviews and does not require any change to your current medication regime or treatment.

If you would like to contribute to the collective knowledge of AEDs and pregnancy please Register Here 

Making Everyday Memory Optimal

Feel like you need help with your memory?  You’re not alone.  In people with epilepsy, 20-50% notice memory difficulties.


We are developing a computer-based training program aimed at helping people like you, and we could use your input. If you are an adult (over the age of 18) with a neurological disorder (for example, having experienced at least one seizure) and concerns about your memory, you might be eligible to try out this new program for free.

What’s involved: attending one-hour, group-based teleconferencing (Zoom) sessions (one per week, for six weeks) with an expert clinician; viewing short educational videos (and trying out some quiz questions); practicing computer-based exercises; receiving feedback.  Throughout this process, we will be collecting information on how the program works and asking for your opinions.

If you’d like to get involved, contact us via our website at we will be in touch.

The ILAE Big Data Commission kindly asks you to share your expertise, to develop a set of core outcomes for future interventional studies for adults with epilepsy:

The EPSET Project

How you can contribute

We are inviting the following groups to share their views on which outcomes are the most important to measure for adults with epilepsy:

  • People aged 18 or above with epilepsy and their representatives (including family, caregivers & members of patient advocacy groups)
  • Healthcare professionals (doctors, nurses & allied health professionals who regularly treat and/or support people with epilepsy)
  • Researchers working in epilepsy clinical trials

Participation will involve two online surveys, in line with COMET Initiative methods.  Some people will also be invited to take part in an online video meeting, although this is optional.

Please click on the below link below to share your expertise, shape the Core Outcome Set and guide future epilepsy clinical trial design:

Please register and complete the survey by 8th July 2022.

If you have any questions, please contact [email protected].


Macquarie University researchers are currently conducting a brief survey to understand the experience of symptom invalidation (i.e., the dismissal or rejection of health symptoms by doctors, family or friends) on Australian adults living with chronic physical health conditions. If you are interested in finding out more about this survey, click:









Examining the efficacy of an online Cognitive Behaviour Therapy (CBT) – based self-management program for adults with neurological disorders


Macquarie University’s eCentreClinic is looking for adults with epilepsy to take part in a free online course to help Australians with neurological conditions learn to manage:

  • Stress, anxiety, frustration and worry.
  • Low mood, sadness, grief and depression.
  • Day-to-day mental or cognitive activities.
  • Day-to-day physical activities.

Click here to find out more about this Wellbeing Neuro Course and current research trial

Quality of life in children with a genetically caused epilepsy disorder: currently recruiting

Researchers at the Telethon Kids Institute would like to talk with parents of children with a genetically caused epilepsy disorder. We wish to find out what challenges or helps quality of life. Findings will help researchers better determine how the lives of these children and their families can be improved.

Participants will be interviewed and it will take approximately one hour over the phone or online.

Who can take part?

Any parent of a child aged 2-18 years with a genetically caused epilepsy disorder

Contact for more information

Associate Professor Jenny Downs[email protected] phone (08) 6319 1763

Approved by Curtin University Human Research Ethics Committee (HREC) HRE2020-0687

‘Absent voices’ (Study 1 Families): closed

Feasibility study exploring whole family experiences of living with parental refractory epilepsy to inform service development

‘Absent voices’ (Study 2 Expert Panel): closed

Feasibility study exploring whole family experiences of living with parental refractory epilepsy to inform service development

Preliminary findings showed:

  • Each family verified life has been impacted, particularly socially and psychologically.
  • They confirmed a general lack of awareness and understanding on the impact of parental epilepsy on family function and dynamics, which added to the stress of family life.
  • Children’s roles and responsibilities vary in families, but most could be considered as young carers.

These studies are no longer recruiting. Data will be available soon.

Clinical Trials for Better Outcomes

Two in three people with epilepsy gain seizure control but that still means that for one in three people, current medication won’t help fully control their seizures.

Further medical research is needed to find more effective treatments. Clinical trials include investigations in which people volunteer to test new treatments to better prevent and manage medical conditions.

People with epilepsy are in a position to help others by participating in clinical trials that can contribute to medical knowledge and result in better treatment outcomes.

Participating in a clinical trial is a commitment and you need to be fully informed about the objectives of the research, what is expected of you and any risks and potential inconveniences that may be experienced during and after the trial.

Finding a Clinical Trial

Clinical trials contribute to medical knowledge and the results of these studies can make a difference in the care of future people by providing information about the benefits and risks of medications, products or procedures.

Other Research in Australia

The following hospital and university-based groups conduct epilepsy-related medical research in Australia:

Epilepsy and Neuropharmacology Research Group. Royal Melbourne Hospital, The University of Melbourne:

Covers both basic and clinical studies relevant to epilepsy and related areas, including traumatic brain injury.

The Florey Institute of Neuroscience and Mental Health:

One of the world’s top 10 brain research centres made up of four medical research institutes uniting to find cures for brain disease, including Howard Florey Institute, the Mental Health Research Institute, the National Stroke Research Institute and the Brain Research Institute.

Epilepsy Research Centre. Austin Hospital, Melbourne:

Comprises clinical researchers and scientists from research teams at the University of Melbourne, Austin Health and the Brain Research Institute working together to better understand the causes, treatment and outcome of epilepsy.

Neuroscience and Neurology Research Group. Monash University:

Features an Epilepsy Research Group focused on a range of issues.

Centre for Neuroscience,  Flinders University, South Australia:

Has a Brain Signals Laboratory is a high-level neurophysiological research unit with a special focus on epilepsy.