SCOPING - Social COmmunication Profiles IN children with Genetic syndromes

What is the study about?

We would like to explore how social communication behaviours may present differently in children with genetic syndromes. Children with genetic syndromes often show diverse developmental profiles, and differences in social communication may present in ways that are not reliably captured by existing assessments. Our aim is to better understand this variation and identify how differences in social communication can be better recognised and supported. 

​

Who can take part?

We are inviting children between 4 and 15 years old with a confirmed diagnosis of a genetic syndrome associated with intellectual disability, and their parents/caregivers to participate. 

​

What does the research involve?

• Parents/caregivers will be asked to complete a brief questionnaire to confirm eligibility, read through the study information and sign an online consent form. We will also ask parents/caregivers to complete a short questionnaire about some of their child's behaviours. 

• We will then arrange a time to visit each child, either at home, at the University of Surrey, or in another location suitable for the family. We will conduct some play-based assessments to assess social skills, autism characteristics, cognitive abilities and receptive language. 

• Parents/caregivers will be asked to complete some questionnaires and an interview about their child's sensory sensitivity, adaptive behaviours, behaviours that challenge, and their own personal and family circumstances. 

​

​

Project team: