Genetic testing is becoming more widely available for people with the two conditions, motor neurone disease (MND) and frontotemporal dementia (FTD). Currently, not every person with MND or FTD is offered genetic testing, but this may change in future. You are invited to participate in an interview by telephone, video conference, email or online text chat/ instant messaging if:

  • You have MND and/or FTD and have been offered genetic testing for MND and/or FTD genes,
  • You are a family member of a person with MND and/or FTD who was offered genetic testing for MND and/or FTD genes.

You can participate in an interview one on one, or together with someone else.

We are hoping to learn more about your experience of genetic testing for MND and/or FTD 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 FTD, and how this experience can be improved. We plan to use this information to create guidelines specific to genetic testing and counselling for people with MND and FTD.

This is a part of a PhD project and has been approved by the Human Research Ethics Committee, University of Technology Sydney (Approval no. ETH20-5122).

If you would like to participate or would like more information, please complete the form below or contact Ashley Crook by email ( Ashley will then contact you to discuss the project further.

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