Telethon Kids Institute: Down Syndrome Study, June 2018

Telethon Kids Institute Study: Down syndrome for the quality of life study for children aged 5 to 18 years


The Telethon Kids Institute is seeking parents of children or adolescents aged between 5 and 18 years to complete a questionnaire.

Associate Professor Jenny Downs and Dr Helen Leonard, from the Telethon Kids Institute, have developed a questionnaire to measure and identify the factors that affect the quality of life for children with Down Syndrome.


Background Information:

The researchers have said that little is known about the factors associated with good quality of life in children with intellectual disability. This is partly because it has been difficult to measure the child’s quality of life.

In 2017 the Telethon Kids Institute’s researchers developed a robust ‘quality of life’ measure specifically for children with intellectual disability.

The next step in this research is to use this new measure and find out what factors are helpful or challenging for the child. This information will identify how best to support children with Down syndrome and could provide evidence to support NDIS planning and advocacy for children with Down syndrome.

The researchers are looking for families with a 5 to 18 year old child with Down syndrome to join this study. Parents choosing to participate will be able to log into a website at the Telethon Kids Institute and complete a questionnaire. The survey can also be done on paper if preferred.

Associate Professor Jenny Downs by email

or phone Jenny on 0411 161 138

Associate Professor Helen Leonard by email

or phone Helen on 0419 956 946

Ms Amy Epstein by email

This survey has been sponsored by Telethon Kids Institute as part of the DDWA partnerships development initiative.