Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND) Study
About the study
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Who can participate?
Parents and carers of a child (at least 1 year old) or an adult with full mutation FXS.
What will happen in the study?
Participants will be asked to respond to a variety of questions. The survey should take about 60 minutes to complete and may be completed in more than one sitting.
We know that FXS, other genetic syndromes, neurodevelopmental disorders, and intellectual disabilities can affect people’s lives in lots of different ways. Our hope is that by collecting a range of data from lots of people with FXS and other genetic 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 FXS. Through this we may be able to offer better ideas for how to support people with FXS in the future.
You can learn more about this study by visiting the study website: https://www.cerebranetwork.com/beond-fxs