Cerebra Network integrates knowledge, expertise and resources across four leading institutions in the United Kingdom to deliver greater insight into children with rare and complex syndromes. The aim is to improve the evidence that underpins better assessment and interventions for clinicians, and leads to improved outcomes for the children and their families.
They are currently conducting the BEOND (Behavioural and Emotional Outcomes in Neurodevelopmental Disorders) project and are inviting parents and caregivers of any children aged 1-16 years, regardless of diagnosis, as well as caregivers of adults who have a diagnosis of a neurogenetic syndrome, learning disability, and/or autism.
Participants will be asked to respond to a variety of questions designed to learn more about behaviour, wellbeing, emotion, cognition, and health, as well as understanding more about access to support, service use, and family wellbeing. The survey will be repeated several times over the next few years with the hope that many families will choose to take part at multiple points so that researchers can see how responses change over time and get a much better insight into development 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 of people with neurogenetic syndromes. Those families who complete the survey will receive individualised feedback reports to put that information back into their hands.
Members of the Cri du Chat support Group who have children in the eligible age range (1 – 16) are encouraged to consider participating in the research. To do so, visit the BEOND site where participation is possible online or by post if that is preferred. Accessing the link to participate online and answering the simple eligibility screening questions will give access to the research study information package and the survey.
Key information is included in the documents attached below in both full version and an adapted/simplified version.