The BEOND study is a survey for parents and caregivers of children and adults with KBG syndrome, other rare genetic syndromes, and neurodevelopmental conditions. You will be asked to respond to a variety of questions - through your answers we will learn more about behaviour, wellbeing, emotion, cognition, and health in children and adults with KBG syndrome, as well as understanding more about access to support, service use, and family wellbeing.
This ambitious survey will be repeated several times over the next few years. Our hope is that many families will choose to take part at multiple points so that we can see how responses change over time and get a much better insight into development in KBG syndrome across the lifespan.
Researchers across the Cerebra Network will be using the wealth of data collected in the BEOND study to address the concerns of families with KBG syndrome. Those families who complete the survey will receive individualised feedback reports to put that information back into your hands.
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Behavioural and Emotional Outcomes in Neurodevelopmental Disorders
In collaboration with: