Physical Activity Intervention for MPS

February 27, 2026 updated by: Dr Daniel Bailey, Brunel University

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

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.

Study Overview

Status

Not yet recruiting

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Estimated)

50

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

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

Description

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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Lay specialist stakeholders
Focus groups
Other: Interviews/focus groups/participatory workshops
Qualitative study (no intervention delivered)
Specialist stakeholders
Interviews
Other: Interviews/focus groups/participatory workshops
Qualitative study (no intervention delivered)
Adults with Mucopolysaccharidosis
Focus groups and participatory workshops
Other: Interviews/focus groups/participatory workshops
Qualitative study (no intervention delivered)

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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).
7 months
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).
7 months
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).
7 months
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).
7 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Brunel University

Collaborators

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

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

March 9, 2026

Primary Completion (Estimated)

September 30, 2026

Study Completion (Estimated)

September 30, 2026

Study Registration Dates

First Submitted

February 27, 2026

First Submitted That Met QC Criteria

February 27, 2026

First Posted (Actual)

March 4, 2026

Study Record Updates

Last Update Posted (Actual)

March 4, 2026

Last Update Submitted That Met QC Criteria

February 27, 2026

Last Verified

February 1, 2026

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 51419-NHS-Dec/2025- 54885-1

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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