NCT06257901

A Co-designed Physical Activity Intervention in Fabry Disease

Co-design of a Physical Activity and Sedentary Behaviour Intervention for Adults with Fabry Disease

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 41 (actual)
• Sponsor: Brunel University · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

Currently, treatments for Fabry disease are pharmacological and predominantly focus on the physical symptoms of the disease. In the general population and individuals with disabilities, increasing physical activity levels and reducing sedentary time can be an effective, non-pharmacological treatment to improve mental health and quality of life. Such interventions have not yet been developed or evaluated in people with Fabry disease. The aim of this study is to co-design a physical activity and sedentary behaviour intervention tailored to the needs of adults with Fabry disease. The study will seek to gain the expertise of adults with Fabry disease, specialist stakeholders (physicians, cardiologists and clinical nurse specialists) and lay specialist stakeholders (family and friends of adults with Fabry disease and members of staff and volunteers at the Society for Mucopolysaccharide Diseases). A range of views and experiences of physical activity and sedentary behaviour will be explored via focus groups (with individuals with Fabry disease and lay specialist stakeholders) and semi-structured interviews (with specialist stakeholders). The information gathered from the focus groups and interviews will then be utilised to inform participatory workshops (with individuals with Fabry disease) to test intervention concepts. Data from these activities will inform the design of a future intervention.

Conditions

• Fabry Disease

Interventions

Type	Name	Description
OTHER	Interviews/Focus groups/Participatory workshops	Qualitative study (no intervention delivered)

Timeline

• Start date: 2024-03-01
• Primary completion: 2024-09-30
• Completion: 2024-09-30
• First posted: 2024-02-14
• Last updated: 2025-02-13

Locations

1 site across 1 country: United Kingdom