Participate in Research

Participate in Research


‘Absent voices’ (Study 1 Families)

Feasibility study exploring whole family experiences of living with parental refractory epilepsy to inform service development

We are looking for interested families who have children and/or young adults (10 to 25 years) in the family and a parent who has refractory epilepsy that would consider taking part in this research. We would like individual family members to do a one-off interview to help us understand different perspectives. This would be followed by an interview with the whole family.

We will ask you about:

  1. Your experiences having a parent with refractory epilepsy or being a parent with refractory epilepsy or caring for someone with refractory epilepsy.
  2. Some stories about family life that could help us understand how you manage epilepsy in the family or ways that you support each other.
  3. Whether you feel adequately supported, the type of support you receive, and the type of support you feel could help you and your family be better supported.

Your views and thoughts are important to help develop ways to improve support to families who have similar issues and concerns. Participation in this research is completely voluntary and confidentiality is guaranteed.

If you are interested in finding out more about volunteering for the Family Interviews, please:

email Karen Hutchinson [email protected] or phone 0421 630 307

‘Absent voices’ (Study 2 Expert Panel)

Feasibility study exploring whole family experiences of living with parental refractory epilepsy to inform service development

We are looking for two adults living with epilepsy and two carers (will consider those with non-epilepsy caregiving roles), one adult and one young (between 10 to 25 years) preferred, to be part of two Expert Panel on-line meetings. These meetings will be held in early June and later in the year, and you will advise and support researchers, Carer NSW and Epilepsy Action Australia and clinicians, with the study below.

This family research study includes parents living with refractory (uncontrolled) epilepsy, other people in the family including children and young people (10 to 25 years), to help us understand experiences, coping strategies and identify ways to improve access to support opportunities for them all. This information will also assist healthcare professionals and support providers to improve the way services are designed and delivered, whilst considering the whole family in epilepsy management.

Participation in this research is completely voluntary and confidentiality is guaranteed.

If you are interested in finding out more about volunteering for the Expert Panel meetings, please:

email Karen Hutchinson [email protected] or phone 0421 630 307


Exciting partnership with HealthMatch

Epilepsy Action Australia has joined forces with HealthMatch – a clinical trial matching platform, designed to make accessing clinical trials much easier for patients.

HealthMatch aims to dramatically accelerate patient recruitment, and progress life-saving cures onto the market faster than existing practices allow.

“At HealthMatch we believe that all patients should have access to every treatment option available to them. This includes clinical trials, which give patients access to new potential cures and medical breakthroughs.

This is why at HealthMatch we have developed a mobile app that allows patients to find clinical trials in the fastest and simplest way possible. A simple tool that matches patients in real-time to clinical trails tailored to their profile.

It’s never been easier to take control of your own health and ensure you have access to the latest advances in medicine.”

To find out more about HealthMatch or to register visit their website by clicking the logo below:

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 who have the condition and their families.

In Australia there are strict rules governing human and animal research activities and 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 potential 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: