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 Smith-Magenis 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 Smith-Magenis 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 Smith-Magenis 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 you can take part online or by post below!

Find out more

Take part online

Take part by post!

If you would prefer to complete the survey with pen and paper, let us know and we'll send you a pack through the post instead. We'll cover all postage and you'll get a personalised feedback report and entry to our prize draw as a thank you.

Who should we send it to?

Where should we send it?

Phone number

How old is the person you care for?

1-3 years

4-16 years

16 or over

I agree for researchers of the Cerebra Network to store my contact details for the intended purpose of sending me information about the BEOND survey. I understand that this form does not constitute consent to participate in the BEOND survey.

Thanks for your interest in the BEOND survey! We will get your survey pack sent out shortly!

The data on this form will be used to send you the information you have requested. We will store the fact that you have requested the information and your contact details to receive the information, but we will not send you any information beyond that which you have requested, nor will we use the data for any other purpose.
The University of Birmingham is the Data Controller of any information you have entered on this form and is committed to protecting the rights of individuals in line with Data Protection Legislation. The University's Data Protection webpages provide further information on your rights and how the University processes personal data. If you wish to submit a data subjects rights request, make a complaint or report a suspected personal data breach, please contact the University’s Data Protection Officer by email at dataprotection@contacts.bham.ac.uk

In collaboration with: