Behavioural and Emotional Outcomes in Neurodevelopmental Disorders
The BEOND study is a survey for parents and caregivers of children and adults with 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 Cornelia de Lange 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 Cornelia de Lange 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 Cornelia de Lange syndrome. Those families who complete the survey will receive individualised feedback reports to put that information back into your hands, as well as being entered into a prize draw.
Click 'find out more' to read more about the study, or click 'Take part to complete the online survey or request a paper pack posted to you free of charge.