Physical Activity Intervention for MPS

NCT07449143 | Not Yet Recruiting

• 1 other identifier: 51419-NHS-Dec/2025- 54885-1
• Study Type: observational
• Target: 50
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Mucopolysaccharidosis (MPS)

Outcome Measures

Primary Outcomes (4)

• 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).

  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).

  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).

  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).

  7 months

Study Arms (3)

Adults with Mucopolysaccharidosis

Focus groups and participatory workshops

Other: Interviews/focus groups/participatory workshops

Lay specialist stakeholders

Focus groups

Other: Interviews/focus groups/participatory workshops

Specialist stakeholders

Interviews

Other: Interviews/focus groups/participatory workshops

Interventions

Interviews/focus groups/participatory workshops OTHER

Qualitative study (no intervention delivered)

Adults with Mucopolysaccharidosis; Lay specialist stakeholders; Specialist stakeholders

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults with Mucopolysaccharidosis, lay specialist stakeholders and specialist stakeholders who meet the eligibility criteria.

You may qualify if:

• 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).

You may not qualify if:

• 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.

Sponsors & Collaborators

• Brunel University: lead
• University College London Hospitals: collaborator
• Northern Care Alliance NHS Foundation Trust: collaborator
• Royal Free Hospital NHS Foundation Trust: collaborator

Study Sites (1)

Brunel University London

London, UB8 3PH, United Kingdom

Location

MeSH Terms

Conditions

Mucopolysaccharidoses

Interventions

Interviews as Topic

Condition Hierarchy (Ancestors)

Carbohydrate Metabolism, Inborn Errors; Metabolism, Inborn Errors; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Lysosomal Storage Diseases; Mucinoses; Connective Tissue Diseases; Skin and Connective Tissue Diseases; Metabolic Diseases; Nutritional and Metabolic Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Central Study Contacts

Daniel Bailey

CONTACT

01895265363; daniel.bailey@brunel.ac.uk

Sarah Gosling

CONTACT

01895265363; sarah.gosling@brunel.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Reader in Sedentary Behaviour and Health

Study Record Dates

• First Submitted: February 27, 2026
• First Posted: March 4, 2026
• Study Start: March 9, 2026
• Primary Completion (Estimated): September 30, 2026
• Study Completion (Estimated): September 30, 2026
• Last Updated: March 4, 2026

Record last verified: 2026-02

Locations

GB (1)