Research Projects

Do you want to contribute to research?

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.

Finding the gaps – Access to Australian government funding support for children with undiagnosed or rare genetic conditions 

The University of Melbourne and Syndromes Without A Name (SWAN) Australia are collaborating on a study funded by the Melbourne Disability Institute. We want to hear from the parents or caregivers of children with undiagnosed and rare genetic conditions about their experience in accessing and maintaining sufficient government funding support (e.g. NDIS, Carers Allowance, Carer Payment), and how this impacts on these children and their families. 
 
The survey should take approximately 15-20 minutes to complete. Participation is voluntary and you may choose not to answer any question and skip to the next.
 
If you wish to participate in this study, please see the participant sheet for more information and click here to take the survey.
 
If you have any questions before proceeding, you can contact:
Fleur Smith (lead researcher) [email protected]
Heather Renton (SWAN CEO, co-investigator) [email protected]
Ant Howard (SWAN administration officer) [email protected]

 

FaceMatch
Dr Tracy Dudding-Byth is a geneticist and one of our SWAN ambassadors. She is leading the team behind FaceMatch, a project that uses facial recognition technology to improve diagnostic rates for genetic conditions. The software maps faces to detect similarities in people with the same condition. FaceMatch received the Research Australia Data Innovation Award last year.
 
  • If your child already has a diagnosis, uploading pictures of their face may help future children find a diagnosis.
  • If you are searching for a diagnosis, the FaceMatch team will work with you and your doctor to try and find a diagnosis.
Registering in FaceMatch takes around 5-10 minutes, and all data is stored in a private and secure manner. Please see the FaceMatch website for more details.
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