What is the BEOND study?
The BEOND study is a survey being run by the Cerebra Network. The survey will look at behaviour, wellbeing, emotion, physical and mental health in children and adults with rare genetic syndromes, intellectual disabilities, or neurodevelopmental conditions with co-occurring intellectual disabilities.
This ambitious survey will be repeated several times over the next 20 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 how individuals develop.
What changes have we made since last time?
We have listened to your feedback to improve the second wave of BEOND. In particular, we have made the survey 50% shorter, provided an option to skip questions, and streamlined our feedback report process so that families receive their reports quicker.
What does taking part involve?
You will be asked to complete a survey, either online or via a posted paper copy (postage free of charge). The survey includes 12 questionnaires which will take about 60 minutes to complete – this can be done in one sitting or multiple sittings.
You will be asked a variety of questions about behaviour, wellbeing, emotion, cognition, health, and access to support.
What did BEOND accomplish last time?
With the data we collected last time, we:
- Developed a bespoke questionnaire to assess anxiety in people with intellectual disabilities.
- Gained new insights into how sleep relates to behaviour, health, and psychological outcomes in people with intellectual disabilities.
- Looked into parent-carer wellbeing and how this relates to the support received from family doctors.
What does BEOND hope to achieve in the long run?
Our hope is that in collecting a range of data from lots of people at different points in their lives, we can see how responses change over time and get a better understanding of how individuals develop over their lives.
The data we collect will also contribute to a better understanding of common areas of difficulty, as well as challenges that might be specific to individuals with particular diagnoses. Through this work we may be able to offer better ideas for support provision in the future.
What do I get for taking part?
Those families who complete the survey will receive individualised feedback reports to put the information back into your hands.
Where can I learn more about BEOND?
You can find more information about BEOND at the Cerebra Network website or email Dr Rory O’Sullivan at [email protected]
