New research opportunity for families in our PWS community

Parents and caregivers of children and adults with Prader-Willi syndrome are being invited to take part in a new survey.

The Behavioural and Emotional Outcomes in Neurodevelopmental Disorders study (BEOND) study is a large-scale survey being run by the Cerebra Network for Neurodevelopmental Disorders.

Participants will be asked to respond to a variety of questions which will enable researchers to learn more about behaviour, wellbeing, emotion, cognition, and health in children and adults with PWS, as well as understanding more about access to support, service use, and family wellbeing. The survey should take around 60 minutes to complete and can be done online or via post.

The study may involve follow-up phone interviews depending on how participants respond to the questions asked during the survey. These will take place at a time suited to the participant and can last up to 90 minutes, though some may be slightly shorter or longer depending on the responses given.

Those families who complete the survey will receive individualised feedback reports, as well as being entered into a prize draw.

To be eligible to take part in the study, the person you care for with PWS should be at least one years old.

To complete the survey online, find out more, and/or to request a postal pack to be sent to you, please click here.