Challenging Behaviour in Lowe Syndrome
Research type
Research Study
Full title
The development of challenging behaviour in Lowe syndrome
IRAS ID
177160
Contact name
Jane Waite
Contact email
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Lowe syndrome (LS) is a rare genetic syndrome associated with intellectual disability (ID). Individuals with LS show behaviours that pose a challenge to the individual and their families. These behaviours include self-injurious behaviour (e.g. head-banging), aggressive behaviours and temper outbursts. Previous research has found that a higher proportion of children with LS show these behaviours (7 in 10) when compared to people who have ID but do not have LS (1 in 10). This means that there is something specific about LS that puts people at risk of developing these behaviours. Importantly, these behaviours affect quality of life. Understanding the early risk markers for development of these difficulties means we may be able to intervene earlier and more effectively.
This study will recruit 30 individuals with LS who from an existing participant database and through syndrome support groups. The study has three stages. In stage one, parents of indviduals with LS will complete a telephone interview about behavioural difficulties. This will help us understand what behaviour looks like in LS and how this compares to other groups. In stage 2, parents will be asked to complete an online questionnaire study about the causes of behaviour. This will allow us to explore the risk markers for the development of behavioural difficulties in LS. In stage 3, individuals with LS will complete a direct face to face assessment of factors known to be associated with behavioural difficulties. This assessment will include play-based, table top and computerised games that measure cognitive abilities (e.g. impulsivity, memory), Autism Spectrum Disorder and everyday living skills.
An ID comparison group will be sought. This will allow for comparisons across groups, strengthening our knowledge within this poorly researched area.
REC name
Wales REC 4
REC reference
15/WA/0155
Date of REC Opinion
28 May 2015
REC opinion
Further Information Favourable Opinion