Participate in Research
Find Epilepsy Clinical Trials with HealthMatch
Epilepsy Action Australia has partnered with HealthMatch to provide members with easy access to the latest clinical trials being conducted throughout Australia.
HealthMatch is an Australian health technology company designed to help patients directly access clinical trials.
People can sign up, select their condition and create a profile and answer a simple questionnaire to determine if they may be eligible for any currently recruiting clinical trials. The platform allows users to create a profile which means that when new trials become available, users 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 and international study 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 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?
- 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 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
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 difficult to manage 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.
- CMOS aims to recruit 20,000 patients nationwide over 5 years
- Patients will be recruited through medical centres with prescribing GPs or specialists nationwide
- 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
Lambert Initiative for Cannabinoid Therapeutics at the University of Sydney’s Brain and Mind Centre is conducting an online survey of Australian medicinal cannabis use over the past 12 months. This survey will provide an updated snapshot on how Australians are currently using cannabis medicinally.
Click here to complete the survey.
For further information on our research please see the information under the ‘Online survey on Chronic Conditions and Well-being’ heading on the project website.
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: