BEOND
Research type
Research Study
Full title
Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders
IRAS ID
299757
Contact name
Caroline Richards
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
20 years, 0 months, 1 days
Research summary
The BEOND study is a longitudinal study which seeks to improve our understanding of the factors affecting key outcomes in behaviour, mood, physical health, and mental health, in people with neurodevelopmental disorders and rare genetic syndromes. The study asks parents and caregivers of children and adults with neurodevelopmental disorders, to fill out a series of questionnaires about the person they care for. Those who agree to being followed up will be followed up and asked to complete the survey again two years later. The research teams from the Cerebra Network will look at the differences in responses between children and adults with different genetic syndromes to understand how different genetics and different disorders can impact on behaviour, mood, physical and mental health, as well as looking at differences in responses from the same participants at different time points to explore how these factors develop across the lifespan.
In addition to the questionnaire, which can be completed online, some participants will be asked to complete additional interviews over the phone, or asked to provide a saliva sample for genetic testing.
The long term aim is to develop a novel and substantial normative database for the population. In order to achieve these aims data will be collected on approximately 3000 individuals and their caregivers. The study will extend and expand a pre-existing unique database of over 2000 individuals with a variety of genetic syndromes and autism that was first established in 2003 and includes multiple longitudinal follow ups. This is currently the largest database of individuals with genetic syndromes and other neurodevelopmental disorders in the UK.REC name
Wales REC 1
REC reference
22/WA/0086
Date of REC Opinion
7 Apr 2022
REC opinion
Favourable Opinion