Mental Health in Rare Genetic Syndromes and Intellectual Disability
Research type
Research Study
Full title
Mental Health in Rare Genetic Syndromes associated with Intellectual Disability
IRAS ID
322009
Contact name
Jessica Mingins
Contact email
Sponsor organisation
Aston University
Clinicaltrials.gov Identifier
https://osf.io/8bgy6, Open Science Framework
Duration of Study in the UK
1 years, 8 months, 1 days
Research summary
Cornelia de Lange Syndrome (CdLS) and Fragile X Syndrome (FXS) are two rare genetic syndromes associated with intellectual disability (ID). Both syndromes are also associated with heightened levels of anxiety compared to people with ID without a genetic syndrome, as well as sleep difficulties and behaviours that challenge. Despite this, there are few valid assessment tools for anxiety suitable for FXS and CdLS. There is also little work on the relationship between sleep, anxiety and behaviours that challenge in CdLS and FXS. The ClASP-ID is a new anxiety screening questionnaire developed by researchers at Aston University, which asks parents or caregivers to report on behaviours commonly associated with anxiety in people with ID. The ClASP-ID has recently been tested in a large group of people with a range of ID levels. It now needs validating in rare genetic syndrome groups, such as FXS and CdLS. The primary aim of this project is to validate the ClASP-ID in FXS and CdLS. These groups have been chosen because of their high levels of anxiety. The secondary aim of this project is to explore the relationship between sleep, anxiety and behaviours that challenge in CdLS and FXS.
This study will use questionnaires, direct assessments and parent interviews to meet the study aims.
Once the ClASP-ID has been validated in CdLS and FXS it may be used clinically to screen for anxiety. Better identification of anxiety will ultimately lead to faster intervention and better quality of life for people with CdLS and FXS and their families. Understanding the relationship between sleep, anxiety, and behaviours that challenge will allow more tailored interventions to be developed.REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
23/LO/0377
Date of REC Opinion
3 May 2023
REC opinion
Favourable Opinion