Behavioural and Emotional Outcomes in Individuals with Neurodevelopmental Disorders
The BEOND study is now open to families!
BEOND: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders.
What is the BEOND study?
BEOND is an international survey study 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, including 22q11.2 deletion / duplication syndrome.
This ambitious survey will be repeated several times over the next 20 years. Our hope is that families will choose to take part at multiple points so that we can see how responses change and individuals develop over time.
Who can take part?
Parents / carers of a person who meets the following criteria:
- - 1 year of age or older
- - Diagnosed with a rare genetic syndrome, including 22q11.2 deletion / duplication syndrome.
Families from all countries can take part. Parents / carers must have sufficient English language proficiency to answer the survey questions.
What does taking part involve?
You will be asked to complete a survey, either online or via a posted paper copy. The survey includes 12 questionnaires which will take about 60 minutes to complete in total – 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.
Following the survey, you can opt-in to complete an additional 5-minute questionnaire or an interview with the researchers.
What does BEOND hope to achieve in the long run?
Our hope is that in collecting 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 with time.
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. Either follow this link or email Dr. Rory O’Sullivan at r.osullivan@bham.ac.uk
How can I take part?
You can sign up to the BEOND study here: https://itm-redcap.bham.ac.uk/surveys/?s=C7Y8FJT7EKR9C9RP