Genetic testing for MND

Genetic testing for MND: we want to hear from you!

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 future. This project is inviting you to participate in an interview by telephone, video conference, email or online text chat/instant messaging if:
  • 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.
This project hopes to learn more about your experience of genetic testing for MND and to gather suggestions for improving experiences for others in 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. This information is hoped to be used to create guidelines specific to genetic testing and counselling for people with MND.
If you are interested in taking part or would like more information, please either complete the form here: 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).

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