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Limited places left for Neuroprogressive and Dementia Network’s Edinburgh event
17th February 2025
The NHS Research Scotland Neuroprogressive and Dementia Network (NDN) is inviting people with experience of Parkinson’s disease to a patient and public involvement (PPI) event later this week
Supported by the NHS Lothian Charity Fund, the in-person gathering will take place at Dynamic Earth in Edinburgh on Thursday 20 February from 10am with limited places left for anyone interested in attending.
It has been designed and developed in collaboration with people who have experience of living with or supporting someone with Parkinson’s disease as part of their involvement in the network’s dedicated PPI group known as Partners in Research.
Patient and Public Engagement Lead, Rosie Ashworth said: “This PPI event is vital in helping us to gain a better understanding of how we can optimise clinical trial participation and the needs of people with Parkinson’s disease.
“After drafting a clinical research companion guide, our Partners in Research want to personally share it with people who either have Parkinson’s disease or support someone with Parkinson’s to ensure that the final resource includes the content they need to be fully informed of when stepping forward to participate in clinical trials.
“While the majority of our Partners in Research work is hosted online through Microsoft Teams, the group had a strong preference towards undertaking part of this process in-person. They felt that being able to work through physical copies of the guide when together would help them gain a useful overview of what it will be like when complete.
“During our event, we will also be recording personal stories from attendees who wish to share their experience of Parkinson’s disease. We know from our work with people affected by dementia that personal stories are incredibly valuable and that providing a platform for this is essential.”
Anyone wishing to attend the event is invited to sign-up via email or by phoning the Network on 01382 423086.
NRS NDN aims to make sure people with a neuroprogressive disease – including Parkinson’s disease, MND, MS, Huntington’s disease and dementia – have access and opportunities to get involved in research.
Partners in Research includes several sub-groups, one of which looks at PPI and co-research for people with experience of Parkinson’s disease.
Over the past few months, a group of people with experience of Parkinson's, whether as a person with the disease or a close supporter, have been working to create a new resource designed to help people with Parkinson’s who are interested in clinical trial research.
Rosie continued: “We are particularly keen to know what would help people who wish to participate in research but may feel they do not 'fit' what is available, as well as people who were involved in clinical research trials which ended early.”
She is keen to stress that while just a few Edinburgh event places are available, the Network recognises that there may be some who would prefer to join remotely.
It will therefore be hosting an online meeting on Thursday 3 April to share how all of the comments and suggestions from the event – and previous online meetings – have led to a more complete draft of the companion guide.
Interested parties can sign-up online to join future meetings.
Rosie added: “We know that joining a new group can feel intimidating, particularly for people who may have no previous experience of research or online group meetings. One of the ways our Partners in Research would like to help with that is through our Familiar Faces Scheme where we pair up a new or prospective member with an existing member of the group.
“We facilitate an online meeting where you can learn one-to-one about what we do as Partners in Research, which then means there is a familiar face when you feel ready to join group meetings.
If you would like to hear more or sign up to join through Familiar Faces, an online form is available.
