Connective Tissue

Ehlers-Danlos Syndrome

Also known as EDS, hypermobile EDS, hEDS, classical EDS

Ehlers-Danlos syndrome describes a group of connective tissue disorders characterized by joint hypermobility, skin fragility, and tissue extensibility. Thirteen subtypes are recognized, each caused by different genetic defects in collagen o

ORPHA:98249 ↗Gene COL5A1/2Gene COL3A1Gene TNXBGene and others (hEDS gene unknown)Prevalence 1-9 per 100,000 (Orphanet)Onset Neonatal, Infancy, ChildhoodGenetic (various)

15

studies recruiting now

as of 7 Sept 2026

95

studies registered in total

as of 7 Sept 2026

4

countries with a recruiting site

as of 7 Sept 2026

26 Jun 2026

most recent study posted

among recruiting studies

Recruiting trials

Showing the 5 most recently updated recruiting studies, as recorded 7 Sept 2026. Live status on each study page.

See all 15 recruiting studies

Where recruiting studies are running

Countries with at least one recruiting site among the studies above, 7 Sept 2026. Tap a country to search trials there.

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Support

Patient organisations

The Ehlers-Danlos SocietyPatient association
Visit website ↗

Registry: EDS Global Registry · Join ↗. Registries connect patients to researchers and often hear about trials first.

About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome describes a group of connective tissue disorders characterized by joint hypermobility, skin fragility, and tissue extensibility. Thirteen subtypes are recognized, each caused by different genetic defects in collagen or extracellular matrix proteins. Hypermobile EDS (hEDS) is the most common but has no identified gene yet. Vascular EDS (COL3A1) carries the highest risk of arterial rupture and requires monitoring.

Common clinical features

Hyperextensible skinGeneralized joint laxityAtrophic scarsFragile skinSoft, doughy skinStriae distensaeCigarette-paper scarsMuscle spasm

From Orphanet’s phenotype annotations (CC BY 4.0). Not a complete list.

Before you apply

Things trial teams commonly ask about for Ehlers-Danlos Syndrome. Not eligibility rules; those are set by each study.

  • EDS subtype must be confirmed using 2017 EDS International Classification criteria before most trials
  • hEDS has the most trial activity since it is the most prevalent, but gene confirmation is not yet possible
  • Comorbidities like POTS, MCAS, and chronic pain are often tracked as secondary endpoints

Related conditions

Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).