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CompletedNCT05137379SED-evalUpdated Jul 16, 2026

Evaluation of a Cohort of Patients With Ehlers-Danlos Syndrome Treated With Orthopedic Surgery (SED-eval)

An observational study in Ehlers-Danlos Syndrome, sponsored by GCS Ramsay Santé pour l'Enseignement et la Recherche. Completed at 2 sites in France. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-07-16.

Sponsored by GCS Ramsay Santé pour l'Enseignement et la Recherche · Observational

Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
200
Ages
18 Years and older
Sex
All
01

Study summary

The aim of this study is to assess the joint involvement (shoulder - ankle - knee - elbow - wrist) in patients with Ehlers-Danlos Syndrome and treated by surgery.

02

Conditions studied

  • Ehlers-Danlos Syndrome

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03

In context

Ehlers-Danlos Syndrome

75 studies on the registry are indexed under Ehlers-Danlos Syndrome; 25 are open to participants now.

This study's enrollment of 200 is above the median of 100 across 33 observational studies indexed under Ehlers-Danlos Syndrome.

Browse Ehlers-Danlos Syndrome studies →

Lead sponsor

GCS Ramsay Santé pour l'Enseignement et la Recherche is the lead sponsor of 198 studies on the registry; 94 are open to participants now.

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

04

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Patient over 18 years-old, suffering from Ehler-Danlos syndrome treated with surgery

Inclusion criteria

  • Patient over 18 years-old suffering from Ehlers-Danlos Syndrome and belonging to the EDS cohort of Raymond Poincaré Hospital in Garches
  • Patient with joint involvement of the shoulder treated by surgery
  • Patient with ankle joint damage treated by surgery
  • Patient with joint damage to the knee treated by surgery
  • Patient with elbow joint damage treated by surgery
  • Patient with joint involvement of the wrist treated by surgery
  • Patient affiliated or beneficiary of a social security scheme
  • Patient who has been informed of the research and does not object to the use of his data.

Exclusion criteria

Exclusion Criteria:

  • Patient objecting to the use of their data
05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
200 participants (actual)
Patient registry
No

Groups and cohorts

  • Elher-Danlos syndrome patients treated with orthopedic surgery

    Behavioral: A joint functional score based on the affected joint

Interventions

  • BehavioralA joint functional score based on the affected joint

    A joint function score according to the affected joint in patients with Ehlers-Danlos syndrome treated by surgery,: Shoulder (SSV; QuickDash), Knee (Lysholm tenger), Ankle (EFAS), Elbow and wrist (QuickDash) )

06

What researchers measure

Primary outcomes

  1. Joint function score according to the affected joint

    A joint function score according to the affected joint in patients with Ehlers-Danlos syndrome treated by surgery,: * Shoulder (SSV; QuickDash),

    Time frame: 1 day

  2. Joint function score according to the affected joint

    A joint function score according to the affected joint in patients with Ehlers-Danlos syndrome treated by surgery,: * Knee (Lysholm tenger),

    Time frame: 1 day

  3. Joint function score according to the affected joint

    A joint function score according to the affected joint in patients with Ehlers-Danlos syndrome treated by surgery,: * Ankle (EFAS),

    Time frame: 1 day

  4. Joint function score according to the affected joint

    A joint function score according to the affected joint in patients with Ehlers-Danlos syndrome treated by surgery,: -Elbow and wrist (QuickDash) )

    Time frame: 1 day

07

Study locations

2 sites
  • Clinique Maussins-Nollet
    Paris, 75019, France
  • Hôpital Raymond Poincaré
    Garches, Île-de-France Region 92380, France
08

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Jul 16, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT05137379
Lead sponsor
GCS Ramsay Santé pour l'Enseignement et la Recherche
Collaborators
European Clinical Trial Experts Network
Responsible party
Sponsor
First posted
Nov 30, 2021
Start date
Mar 30, 2021
Primary completion
Sep 3, 2021
Completion
Mar 30, 2022
Last update
Jul 16, 2026

Oversight

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 Jul 2026. You cannot join it, but the record below documents what was studied.

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Discussion

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