Macquarie University Research: Invitation to participate in important research on Down syndrome
Children and adults aged 10 years and above, opportunities for up to 5 hours
Associate Professor Melanie Porter works within the Psychology Department at Macquarie University and is a practicing Clinical Neuropsychologist. She has over 15 years experience researching a wide range of genetic disorders, including Down syndrome.
Melanie would like to invite members of the Down syndrome community to participate in an ongoing program of research into cognitive, academic, social, psychological, motor and neurological features of Down syndrome.
What are the Research Components and What Would be Required?
Cognitive and Academic
Participation in this component would require parents/guardians to complete two questionnaires (taking approximately 5 to 10 minutes each) and they would be asked to participate in an optional 30 minute interview. Participation also requires up to 2 hours of cognitive testing with the person with Down syndrome, looking at things like attention, memory, language comprehension, problem-solving, reading and mathematical abilities.
This component involves completing a range of social tasks exploring emotion recognition and social reasoning abilities, taking one hour. Individuals with Down syndrome and their parent/guardian would also be asked to complete questionnaires that explore loneliness, social satisfaction, social behaviour and relationships (10 minutes in total per person). An optional extra one hour component requires participants to view faces on a computer screen while their eye movements are recorded.
This component explores mental health issues (depression, anxiety etc.) from a life-long perspective and requires parents/guardians to complete a 30 minute interview and questionnaires (taking 10 minutes) on their son/daughter’s mental health and behaviour. Where possible, individuals with Down syndrome also complete a short questionnaire on their mental health (10 minutes).
There is an option of taking part in our motor study. This involves looking at muscle strength, gait, posture, motor sequencing and reflexes. This component takes one hour.
Older children and adults (15 years or older) can also undertake a structural brain scan. This would involve a non-invasive, painless procedure, where the individual lies in a magnetic resonance scanner (the MRI machine). MRI equipment has been in use in human testing for over two decades with no documented ill effects. It is a bit noisy and claustrophobic, so may not be for everyone. We can send a DVD of the scanner and the sound it makes to those interested.
Participation is voluntary and families may withdraw their consent to participate in any component (or sub-component) of research at any time without consequence.
Research has been approved by the ethics committee at Macquarie University.
Associate Professor Melanie Porter and her team
Work Phone: (02) 9850 6768
Mobile: 0419 221 085
University of Sydney research study: Individual Supported Living
How well does individual supported living work? What is good about individual supported living?
You can help answer these and other questions by joining the ‘Quality and outcomes of individual supported living (ISL) arrangements for adults with intellectual and developmental disabilities’ study.
We are asking adults with intellectual and developmental disability to talk to us about living in their own home. We will also talk to other people involved in the arrangement, for example a family member.
There are many things that make individual supported living good and we would like to know what they are.
We will pick 150 people who live in different areas, in different types of housing and with different types of disability.
If you would like to join or if you would like more information, please contact:
Ms Friederike Gadow
Research Fellow, Centre for Disability Studies
Phone: (02) 9036 3611