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

  : https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fpubmed.ncbi.nlm.nih.gov%252F37970870%252F%2FNBTI%2FUqzEAQ%2FAQ%2Fc4a81e46-2c21-43c8-8300-7ce652a4bba1%2F2%2FgigdV4Y0ts&data=05%7C02%7Cwestminster.rec%40hra.nhs.uk%7C1328e67db219434792e808de9973a963%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639116919207450629%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=LxqIFkfePN%2F5dngYpHMB2RLkqECdqlQH3xjgX5MCi1E%3D&reserved=0
  Introduction: Disorders of gut-brain interaction (DGBI) are common in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder (hEDS/HSD). Food is a known trigger for DGBI symptoms, which often leads to dietary alterations and, increasingly, nutrition support. We aimed to explore dietary behaviors and influencing factors in patients with hEDS/HSD.

  Methods: In a cross-sectional study, patients with hEDS/HSD were recruited from Ehlers-Danlos Support UK (nontertiary) and tertiary neurogastroenterology clinics to complete questionnaires characterizing the following: dietary behaviors, nutrition support, DGBI (Rome IV), gastrointestinal symptoms, anxiety, depression, avoidant restrictive food intake disorder (ARFID), mast cell activation syndrome, postural tachycardia syndrome (PoTS), and quality of life. We used stepwise logistic regression to ascertain which factors were associated with dietary behaviors and nutrition support.

  Results: Of 680 participants (95% female, median age 39 years), 62.1% altered their diet in the last year and 62.3% regularly skipped meals. Altered diet was associated with the following: reflux symptoms ( P < 0.001), functional dyspepsia ( P = 0.008), reported mast cell activation syndrome ( P < 0.001), and a positive screen for ARFID, specifically fear of eating and low interest ( P < 0.001). Approximately 31.7% of those who altered their diet required nutrition support. The strongest predictor of requiring nutrition support was a positive screen for ARFID, specifically fear of eating (OR: 4.97, 95% CI: 2.09-11.8, P < 0.001).

  Discussion: Altered diet is very common in the patients with hEDS/HSD we studied and influenced by functional dyspepsia, reflux symptoms, and ARFID. Those with ARFID have a 4-fold increased risk of requiring nutrition support, and therefore, it is paramount that psychological support is offered in parallel with dietary support in the management of DGBI in hEDS/HSD.
  Has the registry been updated to include summary results?: No
  If yes - please enter the URL to summary results:
  If no – why not?: It will be submitted by the end of April 2026
  Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Yes
  If yes, describe or provide URLs to disseminated materials: The study is published as open access: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fpubmed.ncbi.nlm.nih.gov%252F37970870%252F%2FNBTI%2FUqzEAQ%2FAQ%2Fc4a81e46-2c21-43c8-8300-7ce652a4bba1%2F2%2FgigdV4Y0ts&data=05%7C02%7Cwestminster.rec%40hra.nhs.uk%7C1328e67db219434792e808de9973a963%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639116919207478465%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=aV43i42rS8yuPikccQ3xXkzfFa9b%2FxfclD8%2FHjWtfWg%3D&reserved=0

  and

  https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fwww.sciencedirect.com%252Fscience%252Farticle%252Fpii%252FS0261561425003176%2FNBTI%2FUqzEAQ%2FAQ%2Fc4a81e46-2c21-43c8-8300-7ce652a4bba1%2F3%2F8BcX9Kc1uR&data=05%7C02%7Cwestminster.rec%40hra.nhs.uk%7C1328e67db219434792e808de9973a963%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639116919207496315%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=AVU8l0pLOoCjkuXOXK4OQIVDf%2FWhA%2Bzttgl10WChS%2BI%3D&reserved=0

  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