What is the BEOND study?

“BEOND” is a survey study run by the Cerebra Network (www.cerebranetwork.com).

The survey will be completed by parents/caregivers of children and adults with Down’s syndrome. There are questions about a range of topics important for Down’s syndrome, including wellbeing, emotion, behaviour, health, and cognition.

Who can take part?

Parents/caregivers of a person who is 1) diagnosed with Down’s syndrome, and 2) at least one year old (no upper age limit). The study is open to families in all countries.

What does taking part involve?

You will be asked to complete a survey, either online or via a posted paper copy (postage free of charge). 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.

After completing the survey, you will also have the option to complete an additional questionnaire (5 minute completion time) and/or a telephone interview.

What does BEOND hope to achieve?

Our hope is that in collecting a range of data from lots of people at different points in their lives, we can see how responses change over time and get a much better insight into development in Down’s syndrome.

The data we collect will also contribute to a better understanding of common areas of difficulty across genetic syndromes, as well as challenges that might be specific to individuals with Down’s syndrome. Through this work we may be able to offer better ideas for how to support people with Down’s syndrome in the future.

What do I get for taking part?

Those families who complete the survey will receive individualised feedback reports to put the information back into your hands.

Where can I learn more and take part in BEOND?

You can find more information about BEOND at the Cerebra Network website (https://www.cerebranetwork.com/beond-ds). Alternatively, you can email Dr Rory O’Sullivan at r.osullivan@bham.ac.uk