Share your experiences with this research project
Genetic testing is becoming more widely available for people with motor neurone disease (MND). Currently, not everyone with MND is offered genetic testing, but this may change in the future. This study is being undertaken as part of a PhD project into genetic testing at the University of Technology Sydney.
You are invited to participate in this study and to share your experinces via an interview by telephone, video conference, email or online text chat/instant messaging.
To join the study:
You have MND and have been offered genetic testing for MND genes, OR
You are a family member of a person with MND who was offered genetic testing for MND genes.
We are hoping to learn more about your experience of genetic testing for MND and to gather suggestions for improving experiences for others in the future.
This research will help us to better understand how genetic testing is provided for people with MND, and how this experience can be improved. We plan to use this information to create guidelines specific to genetic testing and genetic counselling for people with MND.
If you are interested in taking part or would like more information, please either complete the form here: https://redcap.link/qs0liv24 or contact Ashley Crook by email (
This study is part of a PhD project and has been approved by the Human Research Ethics Committee, University of Technology Sydney (Approval no. ETH20-5122).
To find out more about Familial MND and genetic testing, please see our information sheet HERE
(c) MND Australia published October 2020