Do you have a family history of MND? Have you considered, or previously received, predictive genetic testing for MND?
You are invited to participate in a study that aims to understand the psychological impacts of familial MND and predictive genetic testing.
We will also investigate what factors influence an individual’s decision to receive or not receive predictive genetic testing for MND. This research is part of Ms Marika Blonner’s Honours of Psychology degree under the supervision of A/Prof Melissa Norberg.
Who is eligible to participate in this study?
We are mainly looking to recruit participants who have familial (or inherited) forms of MND. These forms of MND are sometimes also associated with frontotemporal dementia (FTD).
The first survey page will confirm your eligibility to participate in this study. Only participants who meet the eligibility criteria will be redirected to the main study surveys for which they will be paid upon completion.
What will this study involve?
If you decide to participate, you will be asked to complete questionnaires that ask about your family history of MND, and if applicable, your experience of receiving predictive genetic testing for MND. You will also be asked to complete various questionnaires on your mental wellbeing, your family functioning and the psychological impact of your experiences related to familial MND/FTD and, if relevant, genetic testing.
This study takes about 15-35 minutes in total to complete and involves an online survey about your experiences related to MND and predictive genetic testing.
You will be paid $15 for your time.
We want your help to understand the experiences of persons at risk for MND.
To find out more about the study visit: https://redcap.link/mnd.gt
*The ethical aspects of this study have been approved by the Macquarie University Human Research Ethics Committee. If you have any complaints or reservations about any ethical aspect of your participation in this research, you may contact the committee through the Director, Research Ethics and Integrity (telephone (02) 9850 7854, email