Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
SWAN is sometimes approached by clinicians, researchers, PhD students, Masters of Genetic Counselling students, and psychology students who are seeking participants for their research projects. Research opportunities are shared in our newsletter and you can find the details to more information on current research projects below.
Dr Erin Turbitt is a social science researcher at the University of Technology Sydney. Erin’s work focuses on how parents make decisions on behalf of their child. She previously led a project in the United States (with the National Fragile X Foundation) about families’ priorities for enrolling in Fragile X clinical drug trials.
Erin is leading a new study with researchers at the Murdoch Children’s Research Institute. In her study, she will be interviewing parents of children with a genetic developmental condition to find out what they think about new genetic tests. These tests may give families more detailed information about their child’s condition. For example, the information from the test could include whether a child may be more or less severely affected when compared to the average child with that same condition.
Erin needs parents to participate in an interview study about new genetic tests and she hopes that you are able to help.
Who is doing this research and why?
Researchers at the Murdoch Children’s Research Institute in Melbourne and the University of Technology Sydney.
Who can participate?
If your child has been diagnosed with a genetic developmental condition (this includes conditions such as Fragile X Syndrome, Angelman Syndrome, and Prader Willi Syndrome) Erin wants to hear from you. Your experiences and opinions as parents of a child with a genetic condition are highly valued.
What will happen in the study?You will participate in your choice of a telephone, virtual (via Zoom), or email interview which will take approximately 30 minutes to complete. You will receive a $50 gift card to thank you for your time.
What should I do if I am interested?
Contact Erin Turbitt: [email protected] to register your interest and find out more. Alternatively, you can fill in your details here at this link: https://redcap.link/wzckk8i6 and Erin will get in touch with you.