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Major study tracks rare blood vessel disorder over time

NCT ID NCT05976841

Knowledge-focused Sponsor: Institut National de la Santé Et de la Recherche Médicale, France Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 340 people with vascular Ehlers-Danlos syndrome (vEDS), a rare genetic condition that weakens blood vessels and organs. Researchers will track complications like artery tears, digestive issues, and pregnancy risks to better understand how the disease progresses. The goal is to improve care and quality of life for patients.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

340 people

The number who actually took part.

Started

Dec 2016

Expected to finish

Jan 2028

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients diagnosed as vEDS on a positive genetic testing on the COL3A1 gene.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: Patients eligible for inclusion in this study have to fulfil all of the following criteria: * Patients (adults and children) with genetically-proven vEDS (presence of a pathogenic mutation at the COL3A1 gene); * Patients (or his/her legal guardian) who does not oppose to his/her personal data collection. There are no exclusion criteria for this study.

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Conditions

The condition(s) this trial relates to.

Ehlers-Danlos Syndrome, Type IV Ehlers-Danlos syndrome, vascular type

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Ehlers-Danlos syndrome, vascular type

Contacts and locations

Locations

  • Centre Hospitalier Universitaire Angers

    Angers, France

  • Hôpital Brabois

    Nancy, France

  • Hôpital Claude Huriez

    Lille, France

  • Hôpital Côte de Nacre

    Caen, France

  • Hôpital Edouard Herriot

    Lyon, France

  • Hôpital Européen Georges Pompidou

    Paris, France

  • Hôpital Femme Mère Enfant

    Lyon, France

  • Hôpital Gabriel Montpied

    Clermont-Ferrand, France

  • Hôpital Hôtel Dieu

    Nantes, France

  • Hôpital Michallon

    Grenoble, France

  • Hôpital Nord

    Saint-Etienne, France

  • Hôpital Rangueil

    Toulouse, France

  • Hôpital Saint-André

    Bordeaux, France

  • Hôpital Saint-Eloi

    Montpellier, France

  • Hôpital Trousseau

    Tours, France

  • Hôpital de la Cavale Blanche

    Brest, France

  • Hôpital de la Timone

    Marseille, France

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