EDS surgery questionnaire v1

• Research type

  Research Study

• Full title

  An anonymised questionnaire of people from the UK who have had surgery overseas for cranial or spinal conditions related to Ehlers Danlos (EDS) or hypermobility spectrum disorder.

• IRAS ID

  281103

• Contact name

  Andrew Brodbelt

• Contact email

  andrew.brodbelt@thewaltoncentre.nhs.uk

• Sponsor organisation

  The Walton Centre NHS Foundation Trust

• Duration of Study in the UK

  0 years, 6 months, 1 days

• Research summary

  Ehlers Danlos Syndrome (EDS) is a genetically determined condition, potentially affecting all connective tissues in the body, with several different phenotypes now recognized. Effected individuals experience many symptoms that affect their quality of life. The hypermobile type of EDS (hEDS) has no genetic test (unlike all other types of EDS), and is diagnosed based on a clinical examination. Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility. HSD is diagnosed after other possible diagnoses are excluded, such as any of the Ehlers-Danlos syndromes including hypermobile EDS (hEDS).
  Patients with EDS and HSD have made representation to the UK Department of Health for funding to be treated abroad. This action arises out of the suggestion made by a number of surgeons in the United States and Spain, that cranio-cervical fixation can significantly help these patients. There is a single publication concerning the outcome after treatment of 20 patients published in 2019, although the treatment has been practiced for more than 10 years. This treatment is not, however, widely accepted. There have been national headlines, introducing individual patients stories, some of which claim that the affected individuals’ necks are unstable and that these victims risk rapidly worsening disability, or even death, if not urgently treated. Funds are raised for surgical treatment overseas, on the basis that the NHS is unable to provide this treatment. Stories have filtered back of unsuccessful treatments, and even deaths abroad. No data are available on this group of patients to examine the extent of the surgery abroad, the symptoms that are being treated, if these treatments are successful, and the financial implications to the patients affected. The study aims to gather anonymised information from UK patients treated abroad through the social media contacts of EDS charities.

• REC name

  London - Hampstead Research Ethics Committee

• REC reference

  20/LO/0646

• Date of REC Opinion

  22 Apr 2020

• REC opinion

  Further Information Favourable Opinion