ASD in children with MPS III

  • Research type

    Research Study

  • Full title

    The symptomology of Autistic Spectrum Disorder in children with Mucopolysaccharide Disease III (MPS III)

  • IRAS ID

    192590

  • Contact name

    Claire Wolfenden

  • Contact email

    claire.wolfenden@postgrad.manchester.ac.uk

  • Sponsor organisation

    University of Manchester

  • Duration of Study in the UK

    1 years, 1 months, 3 days

  • Research summary

    Mucopolysaccharide disease type III (MPS III) is a rare genetic disorder occurring in around 1 in 89,000 births and which is severely life-limiting with mortality in the second and third decades. At present, there are no treatments for MPS III although a number of possible treatments are currently being trailed at the Royal Manchester Children’s Hospital. There are four main sub-types of MPS III (A, B, C & D), A being the most common and D rare. Children with all sub-types of MPS III can present with challenging behaviour and recent research explored potential mechanisms. Previous research has identified that children with MPS III are at risk of co-morbid Autistic Spectrum Disorders (ASD), although diagnoses often overlap in the case of genetic disorders. Therefore this study will look at whether children with MPS III have symptoms of ASD rather than a diagnosis of ASD and examine whether there are any differences related on the age of the child and/or the sub-type of MPS III It is hoped that this will help clinicians to identify appropriate ways of supporting these children and their families and ultimately improve their quality of life.
    This project will recruit parents/carers of children with MPS III from a hospital clinic and through the support of the MPS society. They will be asked to complete questionnaires that examine whether their children have behaviours typical of a child with ASD. The child’s age and sub-type of MPS III will also be noted to compare how symptoms of ASD differ across age and sub-type of MPS III.

  • REC name

    East Midlands - Leicester Central Research Ethics Committee

  • REC reference

    16/EM/0110

  • Date of REC Opinion

    8 Apr 2016

  • REC opinion

    Further Information Favourable Opinion