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.
Parents or legal guardians of children who had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.
The survey will take approximately 20 minutes to complete and can be completed online by the survey link. This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne.
For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109 or [email protected], Elly Lynch on 03 9936 6315 or [email protected] or Anita Gorrie on 03 9594 2026 or [email protected]
The Epilepsy Foundation is working with the Royal Children’s Hospital, Melbourne, Genetic Epilepsy Team Australia (GETA), Murdoch Children’s Research Institute and Australian Genomics to find out more about your experiences of caring for a child with complex needs. Your feedback will help the Epilepsy Foundation advocate for an improved Australian healthcare system, and for a greater understanding of rare and genetic epilepsies.
If your child doesn’t have seizures but has a genetic condition in which some people experience seizures, then we encourage you to participate.
Complete the survey by following the link here.
More information about the research can be found via the link below or by scanning the QR code. If you would like further information or have questions, you can contact the study team:
Katherine Howell: [email protected]
Stephanie Best: [email protected]