Our grateful thanks to Cerebra and Dr Jo Moss for their contribution to our radio report which you can hear again via the audio player below. We'd also like to thank our researcher Billy Franklin for pulling together the information below. You can hear more from us via the 'Word on Health' podcast which you can access here.
Neurodevelopmental Disorders. In the UK today there are around half a million children and young people with brain conditions that result in complex medical, educational and social support needs.
We heard in our report, Dr Jo Moss, a Lecturer in Developmental Psychology at the University of Surrey. She's one of the four directors of the new Cerebra Network (alongside Dr Caroline Richards from the University of Birmingham, Dr Jane Waite from the University of Aston and Dr Hayley Crawford from the University of Warwick).
The Cerebra Network for Neurodevelopmental Disorders will expand on the the work of the Cerebra Centre, which was led by Professor Chris Oliver and developed a world-leading research programme through which the behavioural, emotional and cognitive characteristics associated with complex disorders and rare genetic conditions have been documented.
Dr Moss's research aims to improve our understanding of the social and emotional wellbeing of individuals with neurodevelopmental conditions. In the Cerebra Network for Neurodevelopmental Disorders Jo will lead a programme of research into atypical autism. This work will improve our ability to assess autism and related social-communication difficulties in children with rare genetic syndromes and will support the development of targeted interventions.”
Cerebra Network for Neurodevelopmental Disorders
Research will focus on key themes that are central to improving the lives of individuals with severe and complex needs and their families including research into sleep, atypical autism and mental health, while continuing their work on self-injurious behaviour and pain in this population.
Their aim is to improve the evidence that underpins better assessment and interventions for clinicians and leads to improved outcomes for these children and their families.
Key themes: Physical Wellbeing, Emotional and Mental Health
Physical Wellbeing
• Two common physical wellbeing challenges children with complex needs and their families face are dealing with sleep issues and how to identify and manage pain in a child who can’t communicate.
• Toilet training
• Sensory Processing
Emotional and Mental Health
• Focuses on the emotional wellbeing of parents/carers.
Projects
Understanding emotional well-being and distress in people with learning disabilities:
• Developing a new assessment tool to measure emotional well-being and distress in people with learning disabilities and communication difficulties.
• Require parents and caregivers of children over 4 years old with moderate to profound intellectual disabilities to fill out a survey.
Exploring Sleep in Neurodevelopmental disorders through Online and Remote Evaluation (e-SNORE)
• A direct study of sleep in children living in the UK with tuberous sclerosis complex (TSC).
• Children aged 4-15 years with a confirmed genetic diagnosis of TSC will be required to wear an activity monitor (actiwatch) for a period of ten days. Caregivers are asked to record behaviour, seizure and sleep information every morning and evening for ten days using our e-SNORE mobile app.
Parental and family well-being in families who have an autistic child with learning difficulties
• To learn more about parental well-being and anxiety in families who have a child with autism and learning disabilities.
• Online survey for parents and caregivers.
An Online Questionnaire for Parents of Moderate or Late Preterm Children
• Exploring social skills in children born preterm, aiming to understand how they might change over time.
• Online survey for parents and caregivers.
Sleep-Impulsivity Behaviour (SIB) Study
• Exploring sleep and impulsivity in relation to daytime behaviour in children with intellectual disability and autism who do not have a genetic syndrome.
• The project includes a series of studies involving games and sleep assessments. Each family will receive an individualised feedback report. Need children aged 4-15 who have an intellectual disability and autism without a genetic syndrome, and their caregivers.
Investigating Well-being in Autistic Young People and their Parents
• Focused on the well-being and mental health of young autistic people and their parents/caregivers.
Behaviour in children (4-15 years) with CHARGE syndrome
• The researchers aim to learn more about a range of behaviours, skills and impairments individuals with CHARGE syndrome might experience including repetitive behaviour, hyperactivity, mood, challenging behaviour, social functioning, sleep and health. They are also interested in your family’s well-being, the impact that having a child with a disability has on the family and the impact of COVID-19 and related restrictions.
• Online survey for parents and caregivers.
• CHARGE syndrome is a disorder that affects many areas of the body. CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities, and ear abnormalities.
• CHARGE syndrome is a rare disorder, affecting 0.1-1.2/10,000 live births.
• Children with CHARGE have been shown to have a 70% survival rate to five years of age (from actuarial survival analysis)
Listen to this weeks radio report
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