Measuring communication in genetic syndromes: A pilot study

This is a study jointly funded by the TSA. 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 tuberous sclerosis complex (TSC) 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 TSC studies taking place at the Cerebra Centre. We know that communicative abilities may be delayed in TSC, 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 TSC aged 2-15 years, along with the child they care for, whether or not they are showing difficulties with communication or speech. However, families currently taking part in the ‘Exploring difficult behaviours in tuberous sclerosis complex: A follow-up study’ will be unable to take part in this study.

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?
After contacting the researcher (details below), we will send you the information sheet and consent forms to complete and return to the researcher in the pre-paid envelope provided. You may wish to discuss the study with the child you care for, before a decision is made about taking part.
Who should I contact to take part/for more information?

Please contact the researcher Stacey Bissell via telephone 0121 414 2855 or email


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