Patient Engagement Investigation of NMS Assist
This study is about a new digital tool called NMS Assist, designed for people with Parkinson's disease. Many people with Parkinson's experience non-motor symptoms – things like pain, sleep problems, or issues with mood and memory – that aren’t directly related to movement. These symptoms can really impact daily life for both the person with Parkinson's and their caregivers. NMS Assist is designed to help people keep track of these symptoms and learn ways to manage them. We're inviting around 30 people with Parkinson's and their caregivers to use this tool for six months. We want to understand how it's used and if it helps them feel more in control and better able to talk to their healthcare team about their needs. We also hope it might improve their overall quality of life.
At a glance
What is this study about?
Parkinson's disease can bring many challenges, and some of these aren't always about movement. You might experience things like pain, problems sleeping, or difficulties with memory, mood, or mental health. These are called non-motor symptoms, and they can have a big effect on daily life for people with Parkinson's and those who care for them. Sometimes, people don't realise how common or varied these symptoms can be, or how simple changes at home might help manage them.
We've created a new digital system called NMS Assist to help. This system is like a personal assistant that helps you keep an eye on your non-motor symptoms. More than that, it aims to teach you skills to manage these symptoms yourself. We believe that if you can understand your symptoms better and feel more confident managing them, it could make a real difference to your daily life and how you communicate with your healthcare team.
In this study, we want to test NMS Assist to make sure it's easy to use, safe, and truly helpful. We'll be asking people with Parkinson's and their caregivers to use the tool for six months. We'll watch how it's used and ask for feedback to see if it makes them feel more informed, confident, and better able to discuss their symptoms with their doctor or nurse. Ultimately, we hope NMS Assist will improve quality of life and help people manage their non-motor symptoms more effectively.
Key takeaways
- This study tests a digital tool to help manage non-motor Parkinson's symptoms.
- Non-motor symptoms can include pain, sleep issues, and memory problems.
- You would use the NMS Assist tool for six months on your smartphone.
- The aim is to help you feel more confident managing your symptoms.
- Participation could help improve support for many people with Parkinson's.
Who may be eligible?
To join this study, you must be 18 years or older, speak fluent English, and be happy to give your permission to take part. You'll also need a smartphone and access to the internet, as the digital tool needs this to work. You should be able and willing to follow the study's requirements.
If you have Parkinson's disease, you must have a formal diagnosis. You shouldn't be living in a care or nursing home, and you should be able to walk around on your own. It's also important that you're interested in keeping track of and managing your non-motor symptoms. If you're a caregiver, you must be looking after someone with Parkinson's who is also taking part in this study.
You won't be able to join if you've been involved in creating or testing this digital system before. Also, if you have a different type of Parkinsonism, significant memory problems, severe other health conditions that make it unsafe to participate, or a life expectancy of less than six months, this study might not be right for you.
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 a smartphone and internet access?
- Do you speak English fluently?
- Do you have a diagnosis of Parkinson's disease (and can walk on your own)?
- Are you interested in tracking and managing your non-motor symptoms?
What does participation involve?
If you join the study, you, and your caregiver if applicable, will use the NMS Assist digital tool for six months. We'll be monitoring how you use the tool during this time. Throughout the study, we will ask you questions to understand if you feel more knowledgeable and confident in managing your symptoms and talking about them with your healthcare team. A smaller group of participants will also be invited to talk in more detail about their experiences, sharing what worked well and what could be improved. You don't have to take specific medications or attend special clinic visits for this study, as it focuses on using the digital tool at home.
Potential risks and benefits
Locations (1)
- Newcastle UniversityVerified postcodeNewcastle upon Tyne, United Kingdom· Recruiting
Common questions
What are 'non-motor symptoms'?
These are symptoms of Parkinson's that don't involve movement, such as pain, sleep problems, memory issues, or changes in mood.
Who is NMS Assist for?
It's designed for people with Parkinson's disease and their caregivers to help manage non-motor symptoms.
How long will I need to use the digital tool?
Participants in the study will use the NMS Assist tool for six months.
Do I need a smartphone to take part?
Yes, you will need a compatible smartphone and internet access, as the tool is digital.
What if I decide I don't want to continue?
You are completely free to leave the study at any time, and it won't affect your medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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