Ongoing Research Projects

Home > Research > Ongoing Research Projects

Current and Ongoing Research Projects

Australian Pregnancy Register: currently recruiting

The Australian Pregnancy Register (APR) is  an independent research project into the long-term effects and safety of anti-epileptic drugs (AEDs) 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 antiepileptic medication with or without a diagnosis of epilepsy?
  • Not taking antiepileptic 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 

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.

PELICAN – Paediatric Epilepsy Lambert Initiative Cannabinoid Analysis: closed

Epilepsy Action Australia has joined forces with the Lambert Initiative, Sydney University to further our understanding of the benefits and issues faced by parents who would like to, have previously or are currently administering various forms and formulations of medicinal cannabis to their child with epilepsy.

This research will help us better understand key issues and obstacles families face in the decision to use or not use cannabis for their child’s epilepsy, and to identify the types of cannabinoids present in artisanal oils and tinctures being used to treat seizures in children.

This research study is no longer recruiting. 

Read here for results to date

Find further information about this study here

SEISMIC: Sydney Epilepsy Incidence Study to Measure Illness Consequence: closed

Epilepsy Action Australia and The George Institute for International Health have undertaken a major epidemiological research project to measure the impact and incidence of epilepsy.  SEISMIC explored the incidence, psychosocial impact and the household economic burden of epilepsy in a large population.

The resulting paper called Frequency and predictors of psychological distress after a diagnosis of epilepsy: A community-based study was released in 2017 and found that anxiety and depression is common and fluctuates in frequency after a diagnosis of epilepsy.

Key findings include:

  • Psychological distress (i.e. anxiety and depression) occurred in 33% and 24% of 180 adults when first diagnosed, and after 12 months respectively
  • 23% of 77 children felt psychological distressed at diagnosis and remained so 12 months later
  • Low household income, economic hardship, other illness, frequent seizures, and stigma are risk factors for psychological distress.
  • Those who had psychological, psychosocial, and family problems before they were diagnosed with epilepsy are at high risk of this adverse outcome.

This study recruited and followed up people with newly diagnosed epilepsy living or being treated in the Sydney South West Area Health Service over a 3 year period.

This research study is no longer recruiting.

For further information about this study, click here

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