Behaviours that challenge in SATB2-associated syndrome
Research type
Research Study
Full title
Behaviours that challenge in SATB2-associated syndrome
IRAS ID
296378
Contact name
Jane Waite
Contact email
Sponsor organisation
Aston University
Clinicaltrials.gov Identifier
researchregistry6765, Research registry
Duration of Study in the UK
2 years, 5 months, 0 days
Research summary
SATB2-associated syndrome (SAS) is a rare genetic syndrome characterised by moderate to profound intellectual disability, absent or limited speech, and craniofacial abnormalities. Many individuals with SAS display behaviours that challenge. These behaviours have been defined as behaviour of an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or people around them, and that is likely to lead to responses that are restrictive, aversive or result in exclusion.” (The Royal College of Psychiatrists, 2007). Such behaviours include aggressive behaviour, self-injurious behaviour, property destruction and stereotyped behaviour.
Previous research in other rare syndrome groups has indicated that syndrome characteristics (such as health or pain related difficulties, autism characteristics, mental health difficulties and sleep disturbance) may contribute to the development of behaviours that challenge. However, the factors that contribute to these behaviours specifically in SAS have not yet been examined. Detailed descriptions of the profile of behaviours that challenge and characteristics in SAS will help to describe the clinical needs of this population and identify risk markers and maintaining factors for behaviours that challenge.
This is a two-stage study:
Stage 1:
Aims to profile potential functions, triggers and maintaining factors for the occurrence of behaviours that challenge in people with SAS. Parents/carers will complete an in-depth interview about behaviours that challenge shown by their child/person they care for. Parents/carers will also complete a short telephone interview about their child/person they care for's ability.Stage 2:
Aims to identify correlates of behaviours that challenge and understand their contribution to the development and maintenance of behaviour in people with SAS. Individuals with SAS will complete direct assessments to identify person and environmental variables as correlates of behaviours that challenge. Parents/carers will also complete a questionnaire battery about the individual with SAS.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
21/LO/0537
Date of REC Opinion
30 Sep 2021
REC opinion
Further Information Favourable Opinion