New Study for International Families

The BEOND study is now open to families!

BEOND: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders.

What is the BEOND study?

BEOND is an international survey study being run by the Cerebra Network (www.cerebranetwork.com). The survey will look at behaviour, wellbeing, emotion, physical and mental health in children and adults with genetic syndromes, including CASK gene disorders.

This ambitious survey will be repeated several times over the next 20 years. Our hope is that many families will choose to take part at multiple points so that we can see how responses change over time and get a much better insight into how individuals develop.

What does taking part involve?

You will be asked to complete a survey, either online or via a posted paper copy. The survey includes 12 questionnaires which will take about 60 minutes to complete in total – this can be done in one sitting or multiple sittings.

You will be asked a variety of questions about behaviour, wellbeing, emotion, cognition, health, and access to support.

What does BEOND hope to achieve in the long run?

Our hope is that in collecting data at different points in individuals’ lives, we will see how individuals with CASK gene disorders develop over time. The data we collect will also improve our understanding of strengths and difficulties experienced by individuals with CASK gene disorders.

New insights from the study will be shared with the community and published in academic papers. We hope that information gathered by this study may be able to offer better ideas for support provision in the future.

What do I get for taking part?

Each family that completes the survey is eligible to receive both:

• A £20/$25 Amazon voucher
• An individualised feedback report that summarises and explains their survey responses.

Where can I learn more about BEOND?

You can find more information about BEOND at the Cerebra Network website. Follow this link or email Dr Rory O’Sullivan at r.osullivan@bham.ac.uk.

How can I take part in BEOND?

You can take part in the BEOND study by completing the BEOND survey form.