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Parkinson’s clinical trials guide launched to encourage better understanding around participation
The NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) has launched a co-created guide to help encourage the breaking down of barriers to involvement in clinical trials
The Parkinson’s Clinical Trial Research Companion Guide has been designed collaboratively with the intention of making people feel supported to get involved in research opportunities that suit them.
This comprehensive resource is now available to download, alongside a short video in which some of the co-creators share their thoughts on why they consider the guide to be important.
Some physical copies of the guide are also available with plans in place to apply for additional funding if there is sufficient demand.
In order to help inform how many printed copies of the guide are needed, those who would like one or more are asked to complete and submit a form.
Partners in Research — the patient and public involvement (PPI) group of NRS NDN — includes people with lived experience who wish to be involved in research in various ways such as helping to shape the design of studies, looking at what is missing, and what people with lived experience want to see more of.
One of the sub-groups of Partners in Research is made up of people with lived experience of Parkinson’s. This sub-group was key to compiling the guide.
At the end of 2024, people with Parkinson’s joined online meetings run by the Network to discuss some of the challenges of research and consider how they might be better supported to take part.
Dr Rosie Ashworth, NRS NDN’s PPI/Partners in Research Lead said: “We know that clinical trial research can often seem scary, intimidating, and difficult.
“We also know that being given too much information can often feel quite daunting for some, and equally too little information can mean people do not feel informed.
“It’s a difficult balance to strike and our role is to try and change that in a gentle, approachable manner which encourages trust through learning.”
“When we spoke to people with Parkinson’s, they felt that there was not enough information about why trials run the way that they do.
“This can lead to people feeling disheartened, confused, or stuck in limbo if they start on a trial but are unable to complete it, or if it finishes early.
“As a group, we decided that we wanted to create a resource that could support people interested in Parkinson’s clinical trials to learn more and help explain some key aspects to them.”
Across a series of online workshops, and an in-person event held at Dynamic Earth in Edinburgh, people with experience of Parkinson’s came together to shape what would go into the new resource.
The information included was regularly reviewed and refined by the group to make sure that it reflected what people with lived experience wanted to see.
Dr Ashworth continued: “We hope that the guide helps give people an overview of what a clinical trial could involve, and importantly, reinforces the vital message that if a clinical trial is not right for someone, that does not mean they have done anything wrong or are to blame in some way.
“We are proud to say that we will soon have a more interactive online version which will include frequently asked questions (FAQs) and recommended resources. We will be asking people to send in any questions or resources that they would like to see included.”
NRS NDN would like to say a big thank you to the people with Parkinson’s who gave their time to help co-create the guide; to NHS Lothian Charity Fund for supporting the in-person event and production of physical copies of the guide; and to Parkinson’s UK for their support in this work.
Publication date: 3rd November 2025
