We would like to invite parents and caregivers of any person with SATB2-associated syndrome to the BEOND survey!
Participants will be asked to respond to a variety of questions – through your answers we will learn more about behaviour, wellbeing, emotion, cognition, and health, 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 across the lifespan in SATB2-associated syndrome.
Researchers across the Cerebra Network will be using the wealth of data collected in the BEOND study to address the concerns of families of people with neurogenetic syndromes. 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.
To learn more and access the survey please use the following link: https://redcap.link/cnndbeond