Hello, I am Helen.
I am a Principal Research Fellow at the Kids Research Institute Australia, known as “The Kids,” which is one of the Centre’s consortium members.
I am also a Professor at the University of Western Australia Medical School.
I have worked in the area of intellectual disability for about 40 years, initially as a doctor at the Western Australian Disability Services Commission (DSC) for about 20 years and after that in research relating to children and adults with intellectual disability.
I have used the DSC data, combined with data from the Western Australian Department of Education to create an anonymous database (called IDEA) which can be linked to other administrative databases to provide information about intellectual disability.
By collecting information from caregivers I have set up national and international databases to learn more about particular rare conditions (for example Rett syndrome) associated with intellectual disability.
With our team we use these data to understand the health of people with intellectual disability and for rare disorders we also investigate whether there are particular genetic variants that affect clinical severity and the health status of the person.
I also work on some of these projects at the Centre where I am particularly interested in ensuring that intellectual disability is defined consistently across different organisations and across different states.
This is essential if we are using this information to look at health care use.
In my spare time, I love bush-walking and learning about the plants and animals that are native to the local area where I live.
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