Physical Activity Intervention for MPS (NCT07449143) | Clinical Trial Compass
Not Yet RecruitingNot Applicable
Physical Activity Intervention for MPS
United Kingdom50 participantsStarted 2026-03-09
Plain-language 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.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Adults with Mucopolysaccharidosis will be eligible to participate in the study if they meet the following inclusion criteria:
* Diagnosed with any type of Mucopolysaccharidosis.
* Aged ≥ 18 years old.
* Lives in the United Kingdom.
* Deemed safe to participate by a clinician (for participatory workshops).
Exclusion criteria for all participants will be as follows:
* Incapacity to provide informed consent.
* A level of intellectual disability that would prevent the individual from making a meaningful contribution to the focus groups or workshops.
* Unable to communicate in English to a sufficient level to permit engagement in the study.
The circumstances in which an individual may be deemed ineligible to take part in the participatory workshops based on the clinician's assessment are as follows:
* Severe joint pain.
* Neurological compromise.
* Stage 4 heart failure or other condition resulting in breathlessness to a level they cannot participate.
* Other clinical condition which dominates the clinical picture to the extent that it dominates the symptoms and influences the findings (e.g. stroke).
Specialist stakeholders will be members of staff at NHS specialist centres for Mucopolysaccharidosis who are directly involved in healthcare provision to the target population.
Lay specialist stakeholders will be individuals who have been involved in supporting adults with Mucopolysaccharidosis, such as family, friends, and members of staff and volunteers at the Society for Muc…
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.