BEOND Study - Understanding Behavioural Impacts

What is the BEOND study?

The BEOND study is a large-scale survey being run by the Cerebra Network.

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.

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.

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.

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.

Find out more and take the survey

Participation information sheet

BEOND flyer

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