Exercise and lifestyle intervention for patients with vEDS
Research type
Research Study
Full title
Co-Producing an Exercise-based Lifestyle Intervention for Individuals with Vascular Ehlers Danlos Syndrome
IRAS ID
361077
Contact name
Markos Klonizakis
Contact email
Sponsor organisation
Sheffield Hallam University
Duration of Study in the UK
4 years, 0 months, 1 days
Research summary
This research explores the views of people with vascular Ehlers-Danlos Syndrome (vEDS), their families, and healthcare professionals to co-design a safe and acceptable lifestyle intervention.
phase 1
In the first stage, semi-structured interviews will be conducted with vEDS patients, family members or carers, and healthcare professionals including doctors, genetic counsellors, and vascular specialists. Participants will discuss their experiences with physical activity and lifestyle management, focusing on safety, psychological barriers, and the practical challenges of participation. Interviews will be transcribed and thematically analysed using NVivo software.Phase 2
Following this, focus groups will be held to refine the emerging themes and collaboratively explore the feasibility of tailored interventions. These discussions will focus on risk mitigation, long-term adherence, and support needs. Findings will directly inform the design of an individually tailored lifestyle programme for adults with vEDS.Phase 3
The next phase involves testing the feasibility of the co-designed intervention. A 12-week programme will be delivered to 40 adults with genetically confirmed vEDS. It will include low-to-moderate intensity, individually tailored activities designed to support safety, autonomy, and quality of life. Acceptability will be evaluated through participant satisfaction, adherence rates, and feedback. Safety will be monitored through adverse event reporting and clinical oversight. Secondary outcomes such as quality of life, fatigue, anxiety, and physical activity levels will be measured using validated questionnaires. Where feasible, wearable devices will support objective adherence monitoring.Phase 4
Following the intervention, in-depth interviews will be conducted with participants to explore their experiences, perceived benefits, and challenges. These interviews will undergo thematic analysis and will help refine the intervention further by identifying what worked, what needs improvement, and what support structures are most effective. Findings from all phases will guide the development of future trials and practical resources for the vEDS community.REC name
North East - York Research Ethics Committee
REC reference
26/NE/0025
Date of REC Opinion
25 Feb 2026
REC opinion
Further Information Favourable Opinion