Physical activity intervention for MPS
Research type
Research Study
Full title
Co-design of a physical activity and sedentary behaviour intervention for adults with mucopolysaccharidosis
IRAS ID
366467
Contact name
Daniel Bailey
Contact email
Sponsor organisation
Brunel University of London
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Currently, treatments for mucopolysaccharidoses (MPS) 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 MPS.
The aim of this study is to co-design a physical activity and sedentary behaviour intervention tailored to the needs of adults with MPS. The study will seek to gain the expertise of adults with MPS, specialist stakeholders (physicians and clinical nurse specialists) and lay specialist stakeholders (family and friends of adults with MPS 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 MPS 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 MPS) to test intervention concepts. Data from these activities will inform the design of a future intervention.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
26/YH/0046
Date of REC Opinion
3 Mar 2026
REC opinion
Further Information Favourable Opinion