Not yet recruitingOBSERVATIONAL

MND Together: Phase 1

The 'MND Together' project is an important research study looking into how healthcare is planned and provided for people living with Motor Neurone Disease (MND) in the UK. It's not a study where you try new treatments; instead, it's an 'observational' study. This means researchers will carefully look at how care is currently given, particularly when people move between specialist MND services and their local community health teams. They want to understand what works well and what makes things difficult, aiming to build a national picture of MND care. This will help identify ways to improve care coordination for everyone affected by MND.

At a glance

Status

Not yet recruiting

Sponsor

University of Sheffield

Enrolment target

287

Start

01 Feb 2026

Estimated completion

01 Feb 2027

MND (Motor Neurone DIsease)

What is this study about?

The 'MND Together' study is all about understanding and improving how people with Motor Neurone Disease (MND) receive care across the country. MND can be a complex condition, and often involves many different healthcare professionals. This project aims to find out how these different teams, especially specialist MND clinics and local health services, work together to provide care.

Researchers will be talking to people with MND, their family members, and healthcare staff. They'll ask about their experiences, what helps them get good care, and what gets in the way. They will also look at existing information about care. This will help them build a clear picture of what care for MND looks like across the UK.

By understanding these things, the study hopes to identify ways to make care coordination smoother and more effective for people with MND and their families. It's about finding better ways for doctors, nurses, and other care providers to communicate and work together, so that everyone with MND gets the best possible support.

Key takeaways

This study focuses on improving care for people with Motor Neurone Disease (MND).
It's an 'observational' study, meaning no new treatments are being tested.
Researchers want to understand how different health services work together.
Participation involves sharing your experiences through discussions or interviews.
Your input could help shape better MND care across the UK.
You can take part if you have MND, are a carer, or a relevant healthcare professional.

Who may be eligible?

This study is open to a wide range of people who have a connection to Motor Neurone Disease (MND). You might be able to take part if you have MND, or if you are a carer or have cared for someone with MND in the past.

Healthcare professionals, managers, and commissioners who are involved in providing or planning services for people with MND can also participate. The main requirement for taking part is being able to join in discussions, such as focus groups or interviews, in person or by email.

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.

Do you have Motor Neurone Disease (MND)?
Are you a carer or have you cared for someone with MND, now or in the past?
Are you a healthcare professional, manager, or commissioner involved in MND care?
Are you aged 18 years or older?
Are you able to take part in a group discussion or interview (in person or via email)?

Answer every question to see your result.

What does participation involve?

As this is an observational study, you won't be given any new medication or asked to undergo medical tests. Your participation will involve sharing your experiences and views. This might mean taking part in a group discussion (called a focus group) or having an interview, which could be face-to-face or by email. If you're a healthcare professional, your routine records might also be reviewed as part of the study. The researchers might also observe how care is provided in different settings. The specific time commitment will depend on which part of the study you join, but the aim is for participation to be as convenient as possible.

Potential risks and benefits

There are no significant medical risks involved in taking part in this study as it involves sharing experiences, not treatments. You might find discussing your experiences emotional, but you are always free to take a break or stop at any time. A potential benefit is the opportunity to share your insights and help researchers understand the challenges and successes in MND care. Your contribution could help improve how care is delivered for others with MND in the future. Remember, your participation is voluntary, and you can withdraw at any time without giving a reason.

Locations (1)

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

School of Medicine and Populational Health
Verified postcode
Sheffield, United Kingdom

Common questions

What is Motor Neurone Disease (MND)?

MND is a rare condition that affects the brain and nerves. It causes weakness that gets worse over time.

Will I be given any new treatments in this study?

No, this is an observational study, which means researchers are looking at how care is currently given. You won't receive any new treatments or medicines.

What does 'observational study' mean?

It means the researchers will watch, listen, and learn about real-world situations, rather than testing a specific treatment. They're observing how things are done now.

Do I have to live in a specific place in the UK to take part?

No, this study aims to get a national picture of MND care across the UK, so people from all areas are encouraged to consider taking part.

What will happen to the information I share?

The information you share will be kept confidential and used to help researchers understand and improve MND care. It will be combined with information from many other people to get a big picture.

How to find out more

Liam Knox, PhD

l.knox@sheffield.ac.uk +441142222291 Official trial record

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