RecruitingObservational

Co-designing system improvement for Atypical Parkinsonian Syndromes

This project is looking at how to improve health and social care for people living with Atypical Parkinsonian Syndromes (APS) and their carers. People with APS often have complex needs, and the care they receive can be very different depending on where they live in the UK. This study wants to understand what causes these differences and how current services affect people's ability to live well. Researchers will talk to patients, carers, and healthcare professionals to find out what works and what doesn't. The goal is to develop better ways of providing care so that everyone with APS gets the support they need to maintain their quality of life and avoid unnecessary hospital stays.

At a glance

Status

Recruiting

Sponsor

University Hospital Southampton NHS Foundation Trust

Enrolment target

Start

16 Feb 2026

Estimated completion

31 Dec 2026

Atypical Parkinsonian Syndromes

What is this study about?

Atypical Parkinsonian Syndromes (APS) are conditions that can cause many difficult symptoms, affecting movement, thinking, mood, and more. People with APS often need a lot of support from their families and healthcare teams to manage their daily lives and stay healthy. However, the quality and availability of this support can vary greatly across the UK.

This study wants to get to the bottom of why care is so different for people with APS. They will explore what gets in the way of people getting the care they need and how the way services are set up affects their lives. By understanding these issues, the team hopes to find practical ways to make care better within our existing NHS and social care systems.

The project will gather information in several ways: by reviewing current guidelines, talking to people with APS and their carers about their experiences, and speaking with professionals about the challenges they face. They will also look at the services available in different areas. All this information will help them work with patients, carers, and professionals to design new ways of providing care. Ultimately, they hope to create a new model of care that could be put into practice to help everyone with APS.

Key takeaways

Focuses on improving care for people with Atypical Parkinsonian Syndromes (APS).
Aims to understand why care varies across the UK.
Seeks input from patients, carers, and healthcare professionals.
Goals include designing better service models.
Participation involves sharing experiences.
Funded by the National Institute for Health and Care Research (NIHR).

Who may be eligible?

This study is looking for three main groups of people to take part. Firstly, they want to hear from people who have Atypical Parkinsonian Syndromes (APS) themselves. They are interested in hearing from those diagnosed 2-3 years ago to understand their early experiences, and also from those diagnosed more than 3 years ago.

Secondly, the study wants to include carers of people with APS. This means anyone who regularly looks after or helps someone with APS, such as family members, friends, or paid carers, and who has been doing so for at least two years. They are also interested in hearing from carers of people who have recently passed away (within the last year), to understand the full journey of care.

Finally, the study is also looking for healthcare, social care, and charity staff who work with or are aware of the challenges faced by people with APS. Everyone taking part must be able to understand the study and communicate clearly. If someone has other serious health conditions that affect their ability to take part, they might not be suitable for this study.

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.

Are you 18 years old or older?
Do you have Atypical Parkinsonian Syndromes (APS) OR care for someone with APS OR work in health/social care with APS patients?
Are you able to understand the study and communicate clearly?
If you are a carer, have you been caring for at least 2 years or cared for someone who passed away within the last year?
Are you comfortable discussing your experiences?

Answer every question to see your result.

What does participation involve?

This study is expected to run from March 2026 to February 2027. If you decide to take part, you might be asked to share your experiences through an interview. For carers and patients, this will involve talking about how you access and use different services. For professionals, it will involve discussing the challenges of providing care. The study will also involve workshops where participants can work with researchers to explore solutions and help design a questionnaire for future research. The study does not involve any medication or medical assessments, and the total duration of your involvement will depend on the specific parts you participate in.

Potential risks and benefits

A significant benefit of joining this study is the chance to help improve services for people with Atypical Parkinsonian Syndromes (APS). By sharing your experiences, you can directly influence how care is provided in the future for others. For carers and patients, this is an opportunity to highlight what works and what needs improving. For professionals, it's a chance to identify barriers and contribute to solutions. However, it's important to know that discussing personal experiences with a long-term condition or caring for someone with one can sometimes bring up difficult emotions. Also, taking the time to participate might be a slight burden on your schedule. You are always free to withdraw from the study 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.

University Hospital Southampton NHS Foundation Trust
City only
Southampton, England

Common questions

What are Atypical Parkinsonian Syndromes (APS)?

APS are conditions related to Parkinson's disease, but they can have different and often more complex symptoms affecting movement, thinking, and other body functions.

Why is this study being done?

The study aims to understand why care for people with APS differs across the UK and how to improve services to help them live better lives.

Who is funding this research?

The study is funded by the National Institute for Health and Care Research (NIHR), a major health research funder in the UK government.

What will researchers do with the information?

They will use the information to review current services, talk about challenges, and work with participants to design a new, better model of care for people with APS.

How long will the study last?

The study itself runs from March 2026 to February 2027. Your individual involvement will depend on how many parts of the study you take part in.

How to find out more

Annalisa Casarin

annalisa.casarin@nihr.ac.uk +44 (0)7946077082 Official trial record

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