Not yet recruitingOBSERVATIONAL

Physical Activity Intervention for MPS

This study aims to develop a new physical activity programme for adults living with Mucopolysaccharidosis (MPS). Currently, treatments mainly focus on the physical side of MPS with medicines. However, being more active can greatly benefit mental health and quality of life for many people, especially those with long-term conditions. We want to work closely with adults who have MPS, their families, and healthcare experts to design an exercise plan that truly fits their needs. We'll gather ideas through group discussions and interviews, then test out these ideas in workshops. The goal is to create a safe and helpful programme to encourage activity and reduce sitting time, ultimately improving how people with MPS feel day-to-day.

At a glance

Status

Not yet recruiting

Sponsor

Brunel University

Enrolment target

Start

09 Mar 2026

Estimated completion

30 Sep 2026

Mucopolysaccharidosis (MPS)

What is this study about?

This study is all about helping adults with a condition called Mucopolysaccharidosis, or MPS, to be more physically active. At the moment, treatments for MPS mostly focus on using medicines to help with physical problems. But for many people, including those with health conditions, getting more active and sitting less can really boost their mood and general quality of life. This kind of help hasn't really been looked at for people with MPS before.

The main aim of this research is to create a physical activity and movement programme specifically designed for adults with MPS. We want it to be something that really works for them. To do this, we'll be working together with adults living with MPS, along with doctors and nurses who specialise in this condition, and also family members, friends, and support staff who know MPS well.

We'll be gathering everyone's ideas and experiences through friendly group chats and individual interviews. This information will then help us to run workshops where people with MPS can test out different activity ideas. All the insights we gain will be used to shape a future activity programme that is safe, enjoyable, and helpful for people with MPS.

Key takeaways

Aims to create a physical activity plan for adults with MPS.
Will collect ideas from people with MPS, families, and experts.
Focuses on improving well-being through activity, not just medication.
Participation involves sharing experiences in discussions and workshops.
You can withdraw at any time.

Who may be eligible?

This study is looking for adults aged 18 or over who have been diagnosed with any type of Mucopolysaccharidosis and live in the United Kingdom.

To make sure it's safe for you to take part in the practical workshops, your doctor will need to say it's okay. Some reasons you might not be able to join the workshops include severe joint pain, serious heart or breathing problems, or if another significant health issue means it wouldn't be safe or helpful for you to participate.

Unfortunately, you won't be able to take part if you can't give your consent (permission) to join the study, if a learning disability would make it very difficult to contribute meaningfully, or if you can't communicate well enough in English for our discussions.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Am I 18 years old or older?
Do I have a diagnosis of any type of MPS?
Do I live in the United Kingdom?
Can I understand and speak English well enough for discussions?
Can I provide my consent (permission) to take part?

Answer every question to see your result.

What does participation involve?

If you decide to take part, your involvement will depend on your role. If you have MPS, you might be asked to join friendly group discussions (focus groups) with other people who have MPS or family members. These groups will chat about ideas for physical activity and sitting less. Afterwards, you might also be invited to participate in workshops where you can try out some of these activity ideas.

If you're a family member or friend, you might join these group discussions too. If you are a doctor or specialist nurse, you might be asked for a one-on-one interview to share your professional insights. The study is about sharing experiences and ideas, there are no medicines involved, and the full duration of your participation will be explained in more detail if you are interested.

Potential risks and benefits

This study is designed to gather ideas and experiences, so there are no known serious physical risks. For those taking part in practical workshops, we'll make sure a clinician has said it's safe for you. A potential benefit is that your ideas will directly help design a new activity programme that could improve the well-being of people with MPS in the future. You are completely free to withdraw from the study at any time, for any reason, without it affecting your care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Brunel University London
Verified postcode
London, United Kingdom

Common questions

What is Mucopolysaccharidosis (MPS)?

MPS is a group of rare genetic conditions that can affect different parts of the body.

Why is this study focusing on physical activity?

Being more active and sitting less can improve mental health and quality of life for many people, and this hasn't been explored much for people with MPS.

Will I have to do lots of exercise if I join?

No, the study first involves sharing ideas in discussions and sometimes trying out concepts in gentle workshops. It's about designing a future programme, not an intense workout.

What will happen with the information I share?

Your experiences and ideas will be used to help design a new, tailored physical activity programme for adults with MPS.

Can my family be involved too?

Yes, family and friends of adults with MPS are also invited to share their views in group discussions.

How to find out more

Daniel Bailey

daniel.bailey@brunel.ac.uk 01895265363 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.