Participate in Research
Find Epilepsy Clinical Trials with HealthMatch
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.
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 a current knowledge gap about epilepsy medication and has already identified issues that have 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:
- 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
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.
To learn more about the study, go to: https://www.thequestinitiative.com/wp-content/uploads/2020/12/201202_QUEST_ParticpantInfoStatement.pdf
To find out if you are eligible, Click Here
You must enrol before 31 March 2021.
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 a first-of-its-kind 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
People with epilepsy can register themselves into this study and do not need their treating doctor to register them.
Interested doctors, clinics or researchers can find out more about CMOS and register their interest here.
Online Survey for Medicinal Cannabis
Have you used cannabis for medical purposes in the last 12 months? Are you an Australian aged 18 or over?
Lambert Initiative for Cannabinoid Therapeutics at the University of Sydney’s Brain and Mind Centre is conducting an anonymous online survey to help understand how Australians are currently using cannabis medicinally. The survey takes approximately 15-30 minutes and you can save your responses as you go.
Click here to complete the survey.
Online Survey Currently Recruiting:
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
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
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.
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 the journey of patients 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 Epilepsy Action Australia via [email protected] or 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: