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NCT Number: NCT07449143

Physical Activity Intervention for MPS

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.

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Key information

Conditions

Mucopolysaccharidosis (MPS) Carbohydrate Metabolism, Inborn Errors Congenital, Hereditary, and Neonatal Diseases and Abnormalities Connective Tissue Diseases Genetic Diseases, Inborn Lysosomal Storage Diseases Metabolic Diseases Metabolism, Inborn Errors Mucinoses Mucopolysaccharidoses Nutritional and Metabolic Diseases Skin and Connective Tissue Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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 Mucopolysaccharide Diseases.

Treatment and study plan

Interviews/Focus groups/Participatory workshops

Other

Qualitative study (no intervention delivered)

Primary outcomes

  1. Focus groups (adults with Mucopolysaccharidosis)

    Time frame: 7 months

    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).

  2. Focus groups (lay specialist stakeholders)

    Time frame: 7 months

    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).

  3. Semi-structured interviews (specialist stakeholders)

    Time frame: 7 months

    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).

  4. Participatory workshops (adults with Mucopolysaccharidosis)

    Time frame: 7 months

    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).

Study contacts

Contact information is provided by the study sponsor or research team.

Daniel Bailey

CONTACT

[email protected]

01895265363

Sarah Gosling

CONTACT

[email protected]

01895265363

Sponsors and collaborators

Lead sponsor

Brunel University

Other

Collaborators

  • Northern Care Alliance NHS Foundation Trust
  • Royal Free Hospital NHS Foundation Trust
  • University College London Hospitals

Registry information

Official study title

Co-design of a Physical Activity and Sedentary Behaviour Intervention for Adults With Mucopolysaccharidosis

Important dates

Study start
2026
Primary completion
2026
Study completion
2026
First posted
Mar 4, 2026
Registry last updated
Mar 4, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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