The BEOND study is a large-scale survey being run by the Cerebra Network (www.cerebranetwork.com).

 

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. To better understand these changes we have designed this survey.

 

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 a better 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.

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