Autism Advisory & Support Service (AASS) has been contacted by researchers from the University of Sydney regarding a new study about the needs of children and adolescents with neurodevelopmental conditions (NDCs) and their families. Autism Advisory & Support Service is not involved in conducting this study but is sharing the information on behalf of the research team for families who may be interested.
The study is part of the Australian Child Neurodevelopment Community Research Registry. It is being led by Dr Kelsie Boulton (Children’s Hospital Westmead, Brain and Mind Centre, University of Sydney) and Professor Adam Guastella (Clinical Psychologist, Michael Crouch Chair in Child and Youth Mental Health). The project is funded by the Cerebral Palsy Alliance Research Foundation.
What is the study about?
The research aims to better understand the broad needs of children and adolescents with NDCs and their families. Information collected will help build an evidence base to inform the design of services and improve supports available in the community.
Families with a child aged 0–18 years who has been diagnosed with a neurodevelopmental condition are invited to take part. Parents and guardians must be able to read and speak English.
What does participation involve?
Participation is voluntary and begins with completing an online consent form. Families will then be asked to complete a series of questionnaires about:
- their child’s diagnoses and quality of life
- family background
- mental health of both parent/guardian and child
- experiences and needs related to living with a neurodevelopmental condition.
Children who can read are invited to answer age-appropriate questions about their own thoughts, feelings, and experiences.
The survey is anonymous, and once submitted, responses cannot be withdrawn. Families can stop at any time if they find any questions upsetting.
Privacy and results
All information collected will be stored securely on University of Sydney servers. Data will only be used for this project unless families provide consent for further research. Findings will be published, but participants will not be individually identifiable. Families can request a summary of results once available.
How to take part
Families interested in participating can access the survey here: 👉 Survey Link
For further details, families may contact Dr Kelsie Boulton at kelsie.boulton@sydney.edu.au or phone +61 2 9351 0984.
Once again, Autism Advisory & Support Service is not associated with this research but is sharing the information for families who may wish to be involved.
