BEOND Study - Cerebra Network

BEOND' is a survey study looking at longitudinal outcomes for people with rare genetic syndromes and / or intellectual disabilities (characterised by IQ <70). The survey is completed by parents / caregivers and takes approximately one hour to complete. Over 300 families have completed the survey and we are looking for more families before the survey closes next March.

The BEOND study is a large-scale survey being run by the Cerebra Network for 
Neurodevelopmental Disorders (www.cerebranetwork.com). We know that genetic syndromes, 
neurodevelopmental disorders, 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 disorders, and intellectual disabilities in the future.

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