​We are excited to announce that the second wave of the BEOND study will open to families in 2026!
Behavioural and Emotional Outcomes in Neurodevelopmental Disorders
What is the BEOND study?
The BEOND study is a large-scale survey being run by the Cerebra Network.
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We know that genetic syndromes, neurodevelopmental conditions, and intellectual disabilities can affect people’s lives in lots of different ways. As a research group, we are particularly interested in the changes in behaviour, emotion, physical and mental health that people might experience, and the impact that these can have on families.
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That is why we designed a survey to better understand these changes. In 2023 and 2024, over 600 families completed it in our first phase. Now, in 2026, the second phase of BEOND is launching – and we invite these families to take part again and welcome new families too.
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Our hope is that in collecting a range of data from lots of people with different syndromes at different points in their lives, we can develop an improved understanding of common areas of difficulty, as well as challenges that might be specific to certain individuals or groups within this broad community.
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Through this work, we may be able to offer better ideas for how to support people with genetic syndromes, neurodevelopmental conditions, and intellectual disabilities in the future.
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Find out more by watching our short videos:
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What did we find out from the first wave of BEOND?
Click here to see what we found from the first wave of BEOND!
What changes have we made to the second wave of BEOND?
We have listened to your feedback to improve the second wave of BEOND. In particular, we have made the survey 50% shorter, provided an option to skip questions, and streamlined our feedback report process so that families receive their reports quicker than before.
Prof Caroline Richards
Dr Joanna Moss
Dr Jane Waite
Dr Hayley Crawford
What does taking part involve?
Who can take part?
You can take part if you are the parent/guardian/carer of someone who meets these criteria: 1. Any of the following diagnostic categories: a. Those with a rare genetic syndrome that is associated with intellectual disability b. Those with autism c. Those with intellectual disability without a known genetic syndrome d. Typically developing children without any known neurodevelopmental condition, intellectual disability, or genetic syndrome 2. The person you care for is at least one year old All of the questionnaires are ‘informant based’; this means they are designed to be filled out by someone else and cannot be self-completed by the person with the diagnosis.
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?
If you would like to take part, simply click the ‘Take part’ button below!
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