The experiences and needs of individuals with frontotemporal dementia (FTD), and their family members, towards genetic testing

Occurring Dates
Participant Duration
One interview for up to one hour by telephone, email, online videoconference (Zoom) or instant messaging/ text chat
State of study
All States

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.

Further information

If you are interested in taking part or would like more information, please either complete the form here: or contact Ashley Crook by email ([email protected]).

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).

Study Address
The study can be conducted from your home/ workplace as it is either online or by telephone.
Graduate School of Health, University of Technology Sydney, Ultimo NSW 2007
Full Name
Ashley Crook
University of Technology Sydney
Phone Number
0422 359 463