CANDI-hEDS

  • Research type

    Research Study

  • Full title

    Comprehensive Assessment of Nutrition & Dietary Intervention in Hypermobile Ehlers Danlos Syndrome (hEDS/HSD): a personalised approach: Phase I – nutritional and dietary assessment

  • IRAS ID

    293811

  • Contact name

    Qasim Aziz

  • Contact email

    q.aziz@qmul.ac.uk

  • Sponsor organisation

    Queen Marys University of London (Queen Mary)

  • Duration of Study in the UK

    0 years, 3 months, 1 days

  • Research summary

    Hypermobile Ehlers Danlos Syndrome (hEDS/HSD) patients commonly suffer from Functional Gastrointestinal disorders (FGID), i.e. problems with the function rather than the structure of their gut. Symptoms include premature fullness and discomfort after eating regular sized meals (functional dyspepsia) or lower abdominal pain, altered bowel habit and bloating (irritable bowel syndrome) to name but a few. The most widely recognised trigger of symptoms is food, and diet is often the first lifestyle change that patients make to avoid symptoms. Yet there is little evidence regarding which dietary approaches are most likely to improve symptoms and quality of life for this patient group.

    In this study we aim to assess the existing diets of EDS UK members and compare this to patients attending our Neurogastroenterology clinic at the Royal London Hospital and University College Hospital.

    This study will form the basis of a future planned feasibility study which will be dietician-led, aimed at determining if broadening diets and optimising nutrition in a personalised approach will have an impact on symptoms and quality of life.

  • REC name

    London - Westminster Research Ethics Committee

  • REC reference

    21/PR/0916

  • Date of REC Opinion

    12 Jul 2021

  • REC opinion

    Further Information Favourable Opinion