Clinical Trials for Better Outcomes
Up to 70% of people with epilepsy gain complete seizure control with minimal side effects. However, that still means that for a significant three out of 10 people, current medication won’t help control their seizures.
We need further medical research to ensure more effective treatments with fewer side effects. Clinical trials are research investigations in which people volunteer to test new treatments, products or tests to better prevent and manage medical conditions.
In particular, clinical trials are necessary to test new therapies and to develop better ways of using recognised treatments. 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 significant 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
- The Australian New Zealand Clinical Trials Registry (ANZCTR) lists current or recently completed epilepsy trials.
- The U.S. National Institutes of Health has listings of currently recruiting studies.
Clinical trials contribute to medical knowledge and the results of these studies can make a difference in the care of future patients by providing information about the benefits and risks of medications, products or procedures.
Current and Ongoing Research Projects
Australian Pregnancy Register: Currently recruiting
Epilepsy Action is a major partner and supporter of The Australian Pregnancy Register, an independent research project and international study into the long-term effects and safety of anti-epileptic drugs (AEDs) on the mother and child during and after pregnancy.
This register is designed to bridge a current knowledge gap about AEDs and has already identified particular medications and their dosages that lead to malformation in unborn babies. This has resulted in a change in prescribing practices and a reduced rate of malformations.
To be eligible to participate, you need to answer yes to two of the following three questions:
- Planning a pregnancy, currently pregnant or have recently given birth?
- On 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 broader 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
CACOS – Epilepsy: Currently recruiting
Epilepsy Action Australia, MGC Pharmaceuticals and Cannabis Access Clinics have teamed up with Applied Cannabis Research to advance the knowledge and clinical care in adults with epilepsy prescribed medical cannabis.
The Cannabis Access Clinics Observational Study: Observation of safety and health-related outcomes in patients with Epilepsy undergoing medicinal cannabis therapy (CACOS-Epilepsy) has been ethics approved by Bellberry HREC Protocol No.2019-06-502.
Treatment with medical cannabis remains controversial so healthcare providers and consumers need more information to better guide treatment decisions, such as both positive and negative treatment effects. This study will monitor several safety and health-related measures of patients engaged in medicinal cannabis treatment at Cannabis Access Clinics. This will help us gain a better understanding of the role of medicinal cannabis in treating various health conditions including epilepsy and help shape future clinical trials.
This observational study follows the journey of patients with epilepsy utilising the usual services of Cannabis Access Clinics, the only difference is patients may volunteer and consent to complete a number of surveys and have their data de-identified and included in the analysis to inform improvements in clinical care. As an observational study, there will be no changes to the type of medicine or dosages you are prescribed.
If you would like to participate or simply want more information please contact Epilepsy Action Australia via [email protected] or Cannabis Access Clinic study team on 1300 991 477 or email [email protected]
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 to 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.
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.
The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) explored the incidence, psychosocial impact and the household economic burden of epilepsy in a large population.
The resulting clinical 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 multi-centre three-year study recruited and followed up people with newly diagnosed epilepsy living or being treated in the Sydney South West Area Health Service.
The results of this research will provide key data to help shape Epilepsy Action’s services so we can ensure we are making a real and positive impact to the daily lives of people living with epilepsy. At a broader level, it will enable government and healthcare practitioners to make more informed decisions about policy, funding, and management.
This research study is no longer recruiting.
For further information about this study, click here
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.