A co-designed intervention in Fabry disease.
Research type
Research Study
Full title
Co-design of a Physical Activity and Sedentary Behaviour Intervention for Adults with Fabry Disease.
IRAS ID
332233
Contact name
Daniel Bailey
Contact email
Sponsor organisation
Brunel University London
Duration of Study in the UK
0 years, 7 months, 30 days
Research 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.REC name
South Central - Oxford A Research Ethics Committee
REC reference
24/SC/0025
Date of REC Opinion
23 Jan 2024
REC opinion
Further Information Favourable Opinion