An observational study in Mucopolysaccharidosis (MPS), sponsored by Brunel University. Recruiting at 1 site in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-08-19.
Sponsored by Brunel University · Observational
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.
59 studies on the registry are indexed under Mucopolysaccharidoses; 11 are open to participants now.
This study's planned enrollment of 50 is close to the median of 50 across 30 observational studies indexed under Mucopolysaccharidoses.
Browse Mucopolysaccharidoses studies →Brunel University is the lead sponsor of 11 studies on the registry; 2 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Adults with Mucopolysaccharidosis, lay specialist stakeholders and specialist stakeholders who meet the eligibility criteria.
Adults with Mucopolysaccharidosis will be eligible to participate in the study if they meet the following inclusion criteria:
Exclusion criteria for all participants will be as follows:
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:
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 Mucopolysaccharide Diseases.
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Focus groups and participatory workshops
Other: Interviews/focus groups/participatory workshops
Focus groups
Other: Interviews/focus groups/participatory workshops
Interviews
Other: Interviews/focus groups/participatory workshops
Qualitative study (no intervention delivered)
Focus groups (adults with Mucopolysaccharidosis)
Themes describing adults with Mucopolysaccharidosis' views and experiences of physical activity and sedentary behaviour- Emergence of themes describing participants' views and experiences from analysis of focus groups (using the Framework Method).
Time frame: 7 months
Focus groups (lay specialist stakeholders)
Themes describing lay specialist stakeholders' views and experiences of physical activity and sedentary behaviour- Emergence of themes describing participants' views and experiences from analysis of focus groups (using the Framework Method).
Time frame: 7 months
Semi-structured interviews (specialist stakeholders)
Themes describing specialist stakeholders' views and experiences of physical activity and sedentary behaviour- Emergence of themes describing participants' views and experiences from analysis of interviews (using the Framework Method).
Time frame: 7 months
Participatory workshops (adults with Mucopolysaccharidosis)
Themes describing adults with Mucopolysaccharidosis' views and experiences of initial intervention concepts- Emergence of themes describing participants' views and experiences from analysis of participatory workshops (using the Framework Method).
Time frame: 7 months
Started Mar 2026 (actual). Primary completion is estimated for Sep 2026, 6 months after the start.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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