Before participating in any research study requiring you to change or add to your current antiseizure medication regime, please consult your neurologist or treating doctor to assess the individual risks of possible medication interactions or exacerbation of seizure activity.
HealthMatch is an Australian health technology company designed to help patients directly access clinical trials. Epilepsy Action Australia has partnered with HealthMatch to provide members with easy access to the latest clinical trials being conducted throughout Australia.
You can sign up, select your condition, create a profile and answer a simple questionnaire to determine if you are eligible for any currently recruiting clinical trials. The platform allows users to create a profile which means that when new trials become available, you will automatically be notified of these opportunities.
HealthMatch can be used by members, their families and health professionals. To access HealthMatch please click on the banner below.
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.
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: https://redcap.mq.edu.au/surveys/?s=X8JWY4KMC7
Epilepsy Risks and COVID-19 – Survey for people with epilepsy
The COVID-19 pandemic is impacting us all – and can be challenging for people with health conditions like epilepsy.
SUDEP Action & a research team at the University of Oxford, have designed a survey to understand your experience of living with and managing different aspects of epilepsy during the current COVID-19 pandemic. This survey can be done in a few minutes by anyone living with epilepsy, or their main caregiver, including parents, guardians or support workers (UK or International).
By participating, you can play a vital part in our COVID-19 Epilepsy risks project, to help better understand the challenges people with epilepsy are facing, both due to the COVID-19 pandemic and more generally; so we can take action to help people stay safe and live well with epilepsy during the pandemic and beyond.
In this project, we want to find out more are about the well-being of teens and young adults with chronic physical conditions. You will be asked to complete an online survey which contains a number of questions about how you think and feel. Once you have completed the survey, you will receive a $10 voucher to either JBHifi or Big W (your choice).
This study is open to Australian residents, aged 16-25 years, who have been diagnosed with a chronic physical illness.
If you meet the above criteria and want to take part in this study, please click here!
Online Survey: currently recruiting
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
Antiseizure Medication Selection Research Study: recruiting closed
Seeking your opinion
Monash University are conducting a study Experiences of Waiting for Effective Seizure Control in People Recently Diagnosed with Epilepsy. Their research seeks to find a way to predict which anti-seizure medication will be most effective first time.
over 18 years,
had epilepsy for less than three years, and
taking antiepileptic medication?
If you answer yes to all three we would like to hear from you.
Are you the parent of a child with epilepsy aged 8 – 17?
Would you like to help us find out what factors are important when developing academic skills?
If you would like to participate in this research study, scan the QR code or follow this link: https://sydney.au1.qualtrics.com/jfe/form/SV_dcKrsOKTduKD8G1
This study has been approved the Sydney Children’s Hospitals Network Human Research Ethics Committee (SCHN HREC). HREC Reference Number: HREC/18/SCHN/29.
For questions about either study contact Belinda Poole on 0422 739 005 or [email protected]
Join the QUEST: currently recruiting
Conducted by researchers at the University of Sydney, the QUality of life Evaluation STudy (QUEST Initiative) will be investigating the quality of life and health economic impact of prescribed medicinal cannabis on Australians with chronic disease over 12 months. The study is open to Australians with a range of conditions including chronic pain, cancer pain, neuropathic pain, insomnia, anxiety, multiple sclerosis and epilepsy.
You cannot participate if you are currently receiving medicinal cannabis treatment.
Study on Medicinal Cannabis is investigating epilepsy: recruiting closed
Around 30% of people with epilepsy can’t achieve seizure control using conventional medications. Cannabidiol (CBD), a therapeutic and non-intoxicating constituent of cannabis, has recently been approved as an add-on therapy for the management of some treatment-resistant epilepsy disorders. Evidence suggests that medicinal cannabis can improve seizure management and may improve other quality-of life symptoms associated with epilepsy. However, more research is needed and studies are being conducted.
The results from this study will be used to help improve accessibility.
Cannabinoid Medicine Observational Study (CMOS): currently recruiting
Applied Cannabis Research (ACR), is commencing Australia’s largest observational study ever undertaken for medical cannabis. ACR will lead the study in conjunction with Australia’s medical community and key industry partners.
Working with clinical collaborators from major clinics and hospitals, the Cannabinoid Medicine Observational Study (CMOS) will collect data from 20,000 patients nationwide to assess the safety and efficacy of medicinal cannabis products for a range of conditions including fibromyalgia, chronic pain syndromes, epilepsy and other neurological conditions, PTSD and other mental illness.
CMOS provides an opportunity to capture data from a broader range of Australian prescribers and patients than in existing studies. Australia’s Therapeutic Goods Administration (TGA) has now approved over 67,000 applications for medical cannabis. With a lack of randomised clinical trials within the space, there is an urgent need for large-scale evidence-based studies of prescribing medicinal cannabis. Feedback on treatment-related progress, dosing and side-effects is becoming increasingly relevant.
Some subsidised medicinal cannabis products may be available for study participants
Data is collected through progress-related questionnaires over a 12-month period, capturing data on efficacy, side effects, dosage, adherence to medication, changes to other concomitant medications and progressing health status
Patients may be asked to complete separate surveys according to relevant indications to monitor conditions such as pain, anxiety, depression, fatigue, sleep disorders, and physical function
Data is collected from both treating doctors and their patients to provide a complete view of their medical cannabis treatment journey
Data collected will be periodically fed back to participating doctors to inform patient care and for teaching
Patients are only identified by a unique study ID number
The CMOS study is open to both doctors and patients to get involved and can register their interest through either Patient or Doctor tab on the bottom of the page found here
Interested doctors, clinics or researchers can find out more about CMOS and register their interest here.
CACOS – Epilepsy: currently recruiting
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.
This study will monitor several safety and health-related measures of patients engaged in medicinal cannabis treatment at Cannabis Access Clinics. This will help 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 people with epilepsy using 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 Cannabis Access Clinic study team on 1300 991 477 or email [email protected]
Expanding Medical Knowledge
Many people like to participate in research studies knowing that they are helping others by increasing the medical understanding of epilepsy, how seizures are treated and its impact on the lives of those affected by epilepsy.
In Australia there are strict rules governing human and animal research activities. Approval through a recognised ethics committee is needed to ensure there is minimal risk to the participant and potential benefit to the community from the findings.
Before you commit to participating in a clinical trial, it is best to be fully informed about the objectives of the research, what is expected of you and any risks and possible inconveniences that may be experienced during and after the trial.
There are many different types of clinical research studies that may or may not be of direct benefit to you and these include:
Intervention studies that seek better ways to treat epilepsy usually with a medication or new form of treatment
Diagnostic and screening studies that look for better and more efficient ways to diagnose epilepsy and seizure activity
Prevention studies looking at ways to prevent epilepsy
Observational studies investigate epilepsy-related issues in large groups of people
Quality of life studies that try to find better ways to improve the quality of life for people living with epilepsy and their families.