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Measuring communication in genetic syndromes: A pilot study
Researchers at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham are inviting parents/caregivers of all children aged 2-15 years with a genetic syndrome to take part in a study about receptive communication abilities.
Why is this research being conducted?
We are currently developing an assessment that measures communication abilities, for use in other studies taking place at the Cerebra Centre. We know that communicative abilities may be delayed in some genetic syndromes, and that such delays may be associated with the onset of difficult behaviours. We want to know more about specific areas of communication (e.g., responding to wait, requesting help), using a more direct measure of assessment.
Who can take part?
Parents/caregivers of all children with a genetic syndrome (e.g., fragile X syndrome) aged 2-15 years, along with the child they care for, whether or not they are showing difficulties with communication or speech.
What will participation involve?
Parents/caregivers will first complete a pre-visit telephone call with the researcher, to discuss your child’s level of communication, and their likes and dislikes (e.g., specific toys, food, games, activities; approx. 30 mins). We will then arrange a convenient time and day for a research visit, to your home or to the University of Birmingham, to complete the communication assessment (approx. 2 hours). Your child will take part in a series of play-based activities and table top tasks. For some of the activities, your child will complete the activities with you, as well as with the researcher (training will be provided on the day).
How do I take part?
This research project is no longer recruiting
Who should I contact for more information?
Please contact the researcher Stacey Bissell via email firstname.lastname@example.org