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CompletedNCT07930702Updated Nov 12, 2026

Overseas Surgery for EDS Conditions

An observational study in Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder, sponsored by Walton Centre NHS Foundation Trust. Completed at 1 site in United Kingdom. Per ClinicalTrials.gov, last updated 2026-11-12.

Sponsored by Walton Centre NHS Foundation Trust · Observational

Updated Nov 12, 2026Newly registeredGo to Updates ↓
Study type
Observational
Model
Cohort
Time perspective
Retrospective
Enrollment
38
Sex
All
01

Study summary

A questionnaire study to explore the extent, procedures performed, results and costs to patients with ESD and HSD going abroad for surgery.

Read the detailed description

There is no list of patients treated abroad. The main centre treating patients do not publish their results as they are private providers. An anonymised questionnaire distributed through social media based around the charities allows people who have been treated to comment on an area where they may feel that they have been at a disadvantage through not having surgery in the UK, whilst at the same time helping clinicians in the UK to understand in the treatment does help people.

02

Conditions studied

  • Ehlers Danlos Syndrome
  • Hypermobility Spectrum Disorder

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Keywords

  • Ehlers Danlos
  • EDS
  • HSD
03

In context

Ehlers-Danlos Syndrome

67 studies on the registry are indexed under Ehlers-Danlos Syndrome; 24 are open to participants now.

This study's enrollment of 38 is below the median of 150 across 33 observational studies indexed under Ehlers-Danlos Syndrome.

Browse Ehlers-Danlos Syndrome studies →

Lead sponsor

Walton Centre NHS Foundation Trust is the lead sponsor of 17 studies on the registry; 2 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
Child (0–17), Adult (18–64), Older adult (65+)
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

All people in the UK who have had a diagnosis of ESD or HSD who have been overseas for surgery

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • All people in the UK who have a diagnosis of EDS or HSD who have been overseas for surgery.

Exclusion criteria

Exclusion Criteria:

  • People who do not live in the UK
  • People who do not have EDS or HSD
  • People who have not had surgery abroad
05

Study design

Observational model
Cohort
Time perspective
Retrospective
Enrollment
38 participants (actual)
Patient registry
No
06

What researchers measure

Primary outcomes

  1. 20 point questionnaire

    To understand questions such as how many patients are going abroad for surgery and what they are having done, and to help guide further investigations into this group of patients and hopefully improve treatment.

    Time frame: At questionnaire completion (single assessment during the 1-month study response period) following commencement of project.

07

Study locations

1 site
  • The Walton Centre NHS Foundation Trust
    Liverpool, Merseyside L97LJ, United Kingdom
08

Timeline

1 registry update since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Ran from Apr 2020 to primary completion in Jul 2020, 3 months.

How these figures are worked out, and which studies are left out of them.

Registered
Sep 3, 2026
First posted
Nov 12, 2026
StartActual
Apr 23, 2020
Primary completionActual
Jul 23, 2020
CompletionActual
Jul 23, 2020
Last update
Nov 12, 2026
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
Registered
First appeared on the registry. No changes since
Nov 12, 2026
Show all 1 update
  1. Nov 12, 2026
    First appeared on the registry

From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗

09

Registry details

Key details

Study ID
NCT07930702
Lead sponsor
Walton Centre NHS Foundation Trust
Responsible party
Sponsor
First posted
Nov 12, 2026
Start date
Apr 23, 2020
Primary completion
Jul 23, 2020
Completion
Jul 23, 2020
Last update
Nov 12, 2026

Study contacts

Andrew Brodbelt
principal investigator · Walton Centre NHS Foundation Trust

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is completed, as verified in Nov 2026. You cannot join it, but the record below documents what was studied.

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Discussion

Questions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.

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