Cerebra Network for Neurodevelopmental Disorders

The Cerebra Project Psychology team has been profiling the behaviour phenotype of SATB2-associated syndrome for the past 2 ½ years.

Cerebra has been conducting research exploring behaviours and characteristics of children and adults with SAS.

Click the link below to download an overview of the research which they have carried out so far.

Future research: Behaviours that challenge in SATB2-associated syndrome

Behaviours that challenge have been identified as one of the leading priorities for research by families of individuals with SATB2-associated syndrome (SAS).

While it has been reported that individuals with SAS often display a happy disposition or a jovial personality, this is often offset by a presence of behaviours that challenge, such as self-injurious behaviour and aggression.

Research into other rare syndromes has indicated that specific syndrome characteristics (e.g. autism symptomology, health-related difficulties, sleep disturbance and mental health difficulties) can increase the likelihood of behaviours that challenge. However, behavioural phenotypes, and therefore the pathways to behaviours that challenge, vary across different syndrome groups. Currently, almost nothing is known about the factors that contribute to these behaviours specifically in SAS.

This three-stage PhD is funded by the Baily Thomas Foundation and will involve in-depth study of behaviours that challenge in SAS. The overarching aim is to understand the contribution of health-related difficulties, autism symptomology, sleep disturbance and mental health difficulties to the development and maintenance of behaviours that challenge in SAS.

Through the three-stages the project will 1) identify syndrome characteristics that may be associated with behaviours that challenge in SAS, 2) conduct detailed interviews with families about what happens before and after behaviours to understand what may be causing them, and 3) conduct assessments of behaviour with people with SAS to further understand syndrome characteristics and how they are related to behaviours.

By improving our understanding of behaviours that challenge in SAS, this research may lead to syndrome specific guidelines to help families and clinicians reduce these behaviours of concern, leading to improved outcomes and support of individuals and families.

The Baily Thomas PhD studentship has been awarded to Lauren Shelley and will be hosted at Aston University, supervised by Dr Jane Waite. The PhD will be held within the newly formed Cerebra Network for Neurodevelopmental Disorders across Aston University, University of Birmingham, Warwick University and University of Surrey. Collaborators include Dr Caroline Richards, Dr Stacey Bissell, Dr Hayley Crawford and Dr Joanna Moss.

The study is due to commence in October 2020.

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Meet the Cerebra Network for Neurodevelopmental Disorders Team

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