Physical activity and sedentary behavior program for adults with MPS

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study will work with adults with MPS to co-create a physical activity and sedentary behavior intervention. It uses interviews, focus groups, and participatory workshops to gather insights from people with MPS, clinicians, and supporters. The goal is to tailor strategies to the needs of adults with MPS and explore how activity changes might affect quality of life. The design emphasizes stakeholder collaboration to develop feasible components that can be tested in real-world settings. Geographic and language constraints limit participation to adults in the United Kingdom who can provide informed consent.

Why it matters

Who can join: the full rules

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.

Where it's running

• Brunel University London
  London, United Kingdom Recruiting

Study contacts

• Study coordinator: Daniel Bailey
• Email: daniel.bailey@brunel.ac.uk
• Phone: 01895265363

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.