Genetic testing is becoming more widely available for people with frontotemporal dementia (FTD). Currently, not everyone with FTD is offered genetic testing, but this may change in future. We invite you to participate in an interview by telephone, video conference, email or online text chat/instant messaging if:
- You have FTD and have been offered genetic testing for FTD genes, OR
- You are a family member of a person with FTD who was offered genetic testing for FTD genes.
We are hoping to learn more about your experience of genetic testing for FTD 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 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 FTD.
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).