Emotional Experiences and Wellbeing in Rubinstein-Taybi Syndrome

• Research type

  Research Study

• Full title

  Emotional Experiences and Wellbeing in Rubinstein-Taybi Syndrome

• IRAS ID

  324303

• Contact name

  Jane Waite

• Contact email

  j.waite@aston.ac.uk

• Sponsor organisation

  Aston University

• Duration of Study in the UK

  2 years, 3 months, 29 days

• Research summary

  Genetic syndromes show specific profiles of anxiety disorders, which consequently need different intervention approaches. Rubinstein-Taybi Syndrome (RTS), is a rare genetic syndrome. Little is known about the mental health difficulties these individuals experience, however, the limited literature reports accounts of anxiety, depression and emotional outbursts. Delineating the nature of mental health difficulties and the reasons for these difficulties is essential for early intervention strategies that will reduce negative outcomes for individuals with RTS.

  The overall aim of this project is to describe the behavioural signs and triggers of anxiety, low mood, and emotional outbursts at a fine-grained level, describe accounts of the development of mental health difficulties with age at an in-depth clinical level, and identify factors that are associated with mental health difficulties, in particular emotional dysregulation, within RTS by interviewing individuals with RTS who can self-report.

  This is a two-stage study:
  Stage 1: Aims to gather in-depth information regarding emotional regulation, with emotional dysregulation being a factor of poor mental health, such as anxiety, depression or feelings of anger/ frustration. Emotional regulation is the ability to manage the internal and external expression of emotions, and emotional dysregulation is a result of emotions being inappropriately or ineffectively regulated. Parents/ carers and some individuals with RTS will complete an in-depth interview, about behaviours that indicate emotional dysregulation, anxiety, low mood and anger/ frustration.

  Stage 2:
  Aims to identify predictors or correlates of mental health and behavioural outcomes in individuals with RTS. Parents and carers will complete a battery of questionnaires about their child with RTS. The individual with RTS will complete standardised assessments to identify correlates of mental health.

• REC name

  London - Camden & Kings Cross Research Ethics Committee

• REC reference

  23/LO/0821

• Date of REC Opinion

  14 Dec 2023

• REC opinion

  Favourable Opinion