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

Starting soon · Not applicable

Conditions studied: Vascular Ehlers Danlos Syndrome

In brief

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 people with vEDS, their families and clinicians to co-design a safe, tailored physical activity programme, then tests it in a 12-week randomised feasibility study comparing the programme with usual care. The aim is to find out whether the intervention and the trial procedures are safe, acceptable and practical, in order to inform a future full-scale trial. Outcomes focus on recruitment, retention, adherence, acceptability and safety, alongside exploratory measures of physical function, quality of life and microvascular health.

Key facts

Study ID

NCT07697573

Run by

Sheffield Hallam University

People needed

40

Starts

2027-03-01

Expected to finish

2028-03-17

Last updated by the study team

2026-07-13

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Adults aged 18 years or older
• Confirmed diagnosis of vascular Ehlers-Danlos syndrome (vEDS)
• Living in the UK
• Able to provide informed consent
• Medically stable, defined as: no arterial dissection, rupture, or other major vEDS-related vascular event within the preceding 6 months; no recent hospitalisation for vEDS complications; and blood pressure considered controlled by their treating clinician
• Medical clearance from their treating clinician
• Not pregnant at the time of enrolment

You may not qualify if…

• Major vEDS-related vascular event (arterial dissection or rupture) within the previous 6 months
• Recent hospitalisation for vEDS complications
• Blood pressure not controlled by treating clinician
• Pregnancy at enrolment (participants who become pregnant during the intervention are withdrawn from the exercise component but may continue follow-up data collection if they wish)
• Unable to provide informed consent

Where it is running

• Sheffield Hallam University — Sheffield, South Yorkshire, United Kingdom

Full record on ClinicalTrials.gov

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