We’re delighted to announce the launch of ‘Beond’ a new pioneering study with our partners at the Cerebra Network. The Beond project aims to understand the behaviours of children and adults with rare genetic syndromes over their lifetime.
Parents and caregivers of children and adults with Smith-Magenis Syndrome will be asked to take part in a survey. 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 SMS. It will also help us to understand 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 the development in SMS 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 SMS. Those families who complete the survey will receive individualised feedback reports to put that information back into your hands.
For further information and to take part in the Beond project, please visit the Beond website: https://www.cerebranetwork.com/beond-sms.