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Connective Tissue & Musculoskeletal

Vascular Ehlers-Danlos Syndrome Clinical Trials

Also called vEDS, Ehlers-Danlos Type IV, EDS Type IV, Arterial-Ecchymotic Ehlers-Danlos Syndrome

Vascular Ehlers-Danlos Syndrome is a genetic connective tissue disorder caused by mutations in the COL3A1 gene, which affects the production of type III collagen. This protein is essential for maintaining the strength and elasticity of blood vessels, internal organs, and skin.

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About Vascular Ehlers-Danlos Syndrome

Vascular Ehlers-Danlos Syndrome is a genetic connective tissue disorder caused by mutations in the COL3A1 gene, which affects the production of type III collagen. This protein is essential for maintaining the strength and elasticity of blood vessels, internal organs, and skin. People with vEDS have extremely fragile arteries and hollow organs that can rupture or dissect with minimal provocation, sometimes even from normal activities.

The condition presents differently at different ages. Children often show minor features like joint hypermobility, easy bruising, and thin skin. Adults typically present with serious vascular emergencies as their first symptoms. The most common life-threatening complications are arterial ruptures (most often in the chest or abdomen), gastrointestinal perforations, and uterine ruptures during pregnancy.

Diagnosis requires genetic testing to identify pathogenic variants in the COL3A1 gene. While there is no cure, management focuses on regular monitoring with imaging studies, medication to reduce stress on blood vessels, activity restrictions, and careful planning for pregnancies.

Common Symptoms of Vascular Ehlers-Danlos Syndrome

Recognizing the signs of Vascular Ehlers-Danlos Syndrome early can lead to faster diagnosis and better outcomes. Symptoms may vary in severity from person to person. If you or a loved one are experiencing any of the following, consider speaking with a specialist.

  • Thin, translucent skin with visible veins
  • Easy bruising and early-onset varicose veins
  • Distinctive facial features: thin lips, small chin, large eyes, narrow nose
  • Arterial ruptures, dissection, and aneurysms
  • Gastrointestinal perforation
  • Premature aging appearance of skin and joints

Who Vascular Ehlers-Danlos Syndrome Affects

Vascular EDS can affect people of any age and gender. About 25% experience life-threatening complications before age 20, and 80% by age 40. The condition is autosomal dominant, meaning only one affected gene copy from either parent is needed to cause the disease. Median survival is approximately 50 years.

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Genetic Testing

Genetic testing can confirm a diagnosis, guide treatment decisions, and identify family members who may be at risk.

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Trusted Vascular Ehlers-Danlos Syndrome Resources

Reputable organizations and medical references for learning more about Vascular Ehlers-Danlos Syndrome, including disease registries, foundation resources, and clinical guidelines.

Active Clinical Trials for Vascular Ehlers-Danlos Syndrome

Use this Vascular Ehlers-Danlos Syndrome clinical trial finder to see the 12 studies recruiting patients and 6 opening soon in the United States and worldwide, with eligibility criteria in plain English. These studies play a critical role in advancing care for connective tissue & musculoskeletal conditions and may offer access to treatments not yet widely available. Each trial below is sourced directly from ClinicalTrials.gov, with eligibility criteria translated into plain English to help patients and caregivers evaluate whether a study may be a fit.

TrialsSite mapPipeline timeline

Note: Trial recruitment statuses on ClinicalTrials.gov may not immediately reflect recent FDA decisions, sponsor announcements, or enrollment changes. Always confirm a trial's current status directly with the study coordinator before making plans.

18 active trials worldwide
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NOT YET RECRUITINGPHASE3Recently updatedNCT05279937

The Ultrasound-Guided Dextrose Prolotherapy in Ehlers-Danlos Syndrome Patients

Intervention: Dextrose 50% Intravenous Solution, Lidocaine 1% Injectable Solution

Sponsor: Tulane University

1. Specific Aim: To show the safety and efficacy of prolotherapy injection for chronic sacroiliac and myofascial lumbar pain while standardizing an ultrasound guided injection technique

Ages 18 Years – 75 Years1 location
Started Dec 2026Updated 6 days agoEst. Dec 2027 (~1y 2m)
NOT YET RECRUITINGNARecently updatedNCT07743229

COG+OT Telerehabilitation for Adults With Subjective Cognitive Complaints

Intervention: COG+OT Telerehabilitation

Sponsor: Medical University of South Carolina

This pilot study will evaluate a comprehensive cognitive assessment approach and personalized neurocognitive telerehabilitation intervention for adults with subjective cognitive complaints (SCC). The study includes older adults with SCC and adults with Ehlers-Danlos Syndrome (EDS...

Ages 18 Years – 99 Years2 locations
Started Oct 2026Updated 2 weeks agoEst. Jul 2027 (~9 months)
RECRUITINGNARecently updatedNCT07464093

STABLE Pilates for Hypermobility

Intervention: Pilates, Education

Sponsor: Brigham and Women's Hospital

This study is looking at whether Pilates-based exercise can help with hypermobility-related symptoms, like pain.

Ages 18 Years+1 location
Started Jul 2026Updated 1 month agoEst. Dec 2026 (~2 months)
RECRUITINGRecently updatedNCT07672210

PregnAncy-Related Aortic DISsEction in China

Intervention: Intervention strategies including medication or surgery

Sponsor: DeltaHealth Hospital · Shanghai

A multicenter observational study on pregnancy-related aortic dissection

Ages 16 Years – 55 Years4 locations
Started Mar 2026Updated 2 months agoEst. Nov 2026 (27 days)
NOT YET RECRUITINGNARecently updatedNCT07697573

An Exercise and Lifestyle Programme for Adults With Vascular Ehlers-Danlos Syndrome: A Feasibility Study

Intervention: Co-designed exercise-based lifestyle intervention

Sponsor: Sheffield Hallam University

Vascular Ehlers-Danlos syndrome (vEDS) is a rare, life-threatening connective tissue disorder. People with vEDS have often been advised to limit physical activity, yet the safety and feasibility of structured exercise in this group is poorly understood. This study works with peop...

Ages 18 Years+1 location
Started Mar 2027Updated 2 months agoEst. Oct 2027 (~12 months)
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Active trial locations7 cities in the US

Trial Pipeline

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Data from ClinicalTrials.gov, U.S. National Library of Medicine.
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Related Connective Tissue & Musculoskeletal Conditions

Other rare diseases in the connective tissue & musculoskeletal category. Patients with Vascular Ehlers-Danlos Syndrome may find relevant research, shared treatment pathways, or overlapping clinical trials among these related conditions.

Companies Developing Vascular Ehlers-Danlos Syndrome Treatments

1 pharmaceutical company has Vascular Ehlers-Danlos Syndrome in their rare disease portfolio

Frequently Asked Questions About Vascular Ehlers-Danlos Syndrome