What is the study about?
We are wanting to collect information about changes in behaviour, emotion, physical and mental health for people with genetic syndromes, neurodevelopmental disorders and intellectual disabilities. This is so we can understand the impact of these experiences and hopefully offer better ideas of support.

Who can take part?

You can take part if you are a parent or carer of an individual diagnosed with either a genetic syndrome, autism and/or an intellectual disability. The person you care for must be at least one year old.

What will you ask me?

We will ask you to complete a range of questionnaires that will ask you about topics such as the person you care for’s diagnosis, health, behaviour, and mood. We expect these questions will take you 60 minutes to complete. You don’t need to answer them all in one sitting. We may also ask to do a phone interview with you.

For more information or to take go to:
www.cerebranetwork.com/beond-tsc

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TSC Ireland

TSC Ireland was established in 2015 and registered as a charity later that year. The founding members were parents of young children with TSC who recognised the need for an Irish organisation that would support, inform and advocate for the TSC community here.

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