ADHD in Children with Sturge-Weber Syndrome.

  • Research type

    Research Study

  • Full title

    Investigating the Prevalence and Profile of ADHD and the Effectiveness of the Conners Continuous Performance Test Third Edition (CPT-3) Attention Deficit Assessment Tool, in Children and Young People with Sturge-Weber Syndrome.

  • IRAS ID

    333660

  • Contact name

    CHRISTINA DANAI GRIVA

  • Contact email

    c.griva@surrey.ac.uk

  • Sponsor organisation

    University of Surrey

  • Duration of Study in the UK

    1 years, 6 months, 0 days

  • Research summary

    This project will investigate the prevalence and profile of attention deficit hyperactivity disorder (ADHD) symptoms in children/ young people (CYP) with Sturge-Weber syndrome (SWS). SWS is a rare vascular disorder characterised by a facial birthmark, abnormal blood vessels in the brain, and eye abnormalities, as well as epilepsy and autism. Parental and teacher reports, as well as clinical observations, also highlight a high prevalence of ADHD symptoms, with a higher reported prevalence of inattention, in individuals with SWS. However, empirical studies into this are limited.

    Existing, anonymised clinical data on ADHD, ASD, Epilepsy and Intellectual Disability diagnoses, ADHD and ASD questionnaire scores, cognitive assessment scores, as well as ADHD scores on a computerised assessment, will be analysed. These data originate from the Sturge-Weber and Neurocutaneous Disorders (SWANS) clinic, in Great Ormond Street Hospital (GOSH). It is hypothesized that there will be a high prevalence of ADHD in CYP with SWS, compared to the reported prevalence of the condition in the general population. It is also predicted that the profile of ADHD in the SWS population will indicate more symptoms of inattention than hyperactivity in CYP with SWS. Findings will highlight the importance of ADHD assessments for CYP with SWS in clinical settings to facilitate much needed timely support and treatment for this population.

    A secondary aim is to explore the sensitivity and specificity of the Conners’ Continuous Performance Test (CPT-3), in the diagnosis of ADHD in this population. The CPT-3 is a computerised assessment of attention-related difficulties, used in the SWANS Clinic at GOSH, in individuals aged 8 years old and older. This part of the study will shed light on the effectiveness of this assessment tool for use in CYP with SWS within clinical settings.

  • REC name

    North East - Newcastle & North Tyneside 2 Research Ethics Committee

  • REC reference

    23/NE/0221

  • Date of REC Opinion

    15 Jan 2024

  • REC opinion

    Further Information Favourable Opinion