CompletedObservational

Exploring the potential for ENGAGE-PD physical activity coaching in the NHS for people newly diagnosed with Parkinson’s: perspectives of people with lived experience of Parkinson’s

This study wants to hear from people with Parkinson's and their care partners in the UK. Researchers are looking to develop a UK version of an exercise coaching programme called ENGAGE-PD, which was originally created in the USA. Parkinson's is a growing condition that can affect movement and independence, but physical activity can help slow its progress. This study aims to gather opinions on how to make ENGAGE-PD work best within UK NHS care for people who have recently been diagnosed. Their ideas will help create a programme that offers personalised coaching, a workbook, and ways to track activity, ultimately helping people stay active and manage their condition.

At a glance

Status

Completed

Sponsor

University of Plymouth

Enrolment target

Start

17 Jun 2025

Estimated completion

22 Aug 2025

Parkinson's disease

What is this study about?

Parkinson's is a condition that affects many people, and numbers are expected to grow. It can make everyday movements more difficult and impact independence. However, research from around the world suggests that staying physically active can be really helpful in slowing down how Parkinson's progresses. The problem is, many people with Parkinson's find themselves less active than they used to be.

This study is looking at a programme called ENGAGE-PD, which provides personalised coaching to help people with Parkinson's stay active. It was first developed in the USA, and it includes one-to-one coaching, a special workbook, and tools to help track physical activity. The goal of this research is to adapt this programme for the UK, making sure it works well within our NHS services, especially for those who have recently been diagnosed with Parkinson's.

To do this, the researchers want to talk to people in the UK who have Parkinson's, or who care for someone with Parkinson's. They want to hear about your experiences and ideas to help design a UK-friendly version of ENGAGE-PD. Your input will be really important in finding out what aspects of the programme are most useful and how it can best support people here.

Key takeaways

Help shape a new UK exercise programme for Parkinson's.
Share your experiences from home; no travel needed.
Receive payment for your time and contribution.
Contribute to better care for newly diagnosed people.
Study runs from May to December 2025.

Who may be eligible?

The study is looking for adults aged 18 or over. This includes people who have been diagnosed with Parkinson's, especially those diagnosed within the last five years, as well as those who care for someone with Parkinson's. Most participants need to have a confirmed diagnosis from a doctor, but up to a quarter of the people taking part can be care partners.

It's important that you are able to understand what the study involves and agree to take part. Also, you'll need to be able to read and understand information in English, either by yourself or with help from a care partner, as the study materials will mainly be in English.

Unfortunately, if you don't have a confirmed Parkinson's diagnosis or a care partner with one, or if you're not able to give your informed consent, you won't be able to take part in this particular 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 a confirmed diagnosis of Parkinson's, or are you a care partner for someone who does?
Can you understand information in English, by yourself or with help, to give your consent?
Are you able to share your ideas for a few different stages via web or post?

Answer every question to see your result.

What does participation involve?

If you decide to take part, the researchers will share their ideas about the ENGAGE-PD programme with you. This will happen either through a secure website or by post, depending on your preference. You'll be asked to give your opinions over a few different stages, helping the researchers decide which parts of the programme are most important for people in the UK.

At the start, you'll fill out a short questionnaire that asks for some basic information about yourself. This information will be kept private – anything that could identify you will be removed – so that the researchers can make sure they're hearing from a good mix of people. The study is designed so you can complete each stage at a time that suits you best. To thank you for your time, you'll receive a payment, which can be in cash or as a voucher, for each stage you complete.

Potential risks and benefits

Participating in this study offers the chance to directly influence the development of a new exercise programme for people with Parkinson's in the NHS. You'll be helping to shape a programme that could improve physical activity levels, independence, and self-management for many newly diagnosed individuals. As a thank you for your time, you'll receive a small payment. The main commitment is the time you'll spend sharing your thoughts, but each stage is designed to be flexible around your schedule. You are free to withdraw from the study at any point without needing to give a reason, and it won't affect your medical care.

Locations (1)

University of Plymouth
Approximate
Plymouth, United Kingdom

Common questions

What is ENGAGE-PD?

It's an exercise coaching programme from the USA that includes personalised coaching, a workbook, and activity tracking to help people with Parkinson's stay active.

Why is this study happening?

It aims to adapt the ENGAGE-PD programme for use in the UK's NHS, based on feedback from people with Parkinson's and their carers, to help newly diagnosed individuals.

Will I have to travel?

No, you don't need to travel. You can share your ideas through a secure website or by post.

Will I get paid for taking part?

Yes, you will receive a payment in cash or a voucher to recognise the time you spend on each stage of the study.

How long will the study feedback process last?

The study aims to gather feedback between May and December 2025, but your personal involvement will be less than this overall timeframe.

How to find out more

Jonathan Gilby

jonathan.gilby@postgrad.plymouth.ac.uk +44 (0)7825016312 Official trial record

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