Newcastle Hospitals has teamed up with Newcastle University and University Hospitals Plymouth NHS Trust to create a new research registry for people with Parkinson’s.
The Join Parkinson’s Research (JPR) registry or JPR@Research+Me, is an online platform where anyone with Parkinson’s can sign up to hear about clinical studies.
Fastest growing neurological condition
Parkinson’s is the world’s fastest growing neurological condition. Symptoms can include tremor, slowness of movement, memory and thinking problems, and sleep problems.
There are currently no treatments that can slow or stop progression of Parkinson’s, therefore clinical research studies are vital.
Less than five percent of people with Parkinson’s take part in clinical research studies, often because they’re not aware of studies, or don’t have the opportunity to sign up.
Increase research opportunities
It is hoped that the new registry will help to increase the number of research opportunities in Parkinson’s and advance new treatments.
People who sign up to the registry will be contacted by health researchers if a suitable study is found. They can then decide if they’d like to take part.
The project is co-led by Professor Camille Carroll from the National Institute of Health and Care Research (NIHR)Newcastle Biomedical Research Centre and Professor Yiannkou, a gastroenterologist.
The development of JPR builds on the successful Research + Me registry, set up by Professor Yiannakou, and a team at Newcastle Hospitals.
Exciting development
Phil Hockey, who has Parkinson’s and Kate, his wife, have been involved in the project from the start. Phil said:
“I am delighted to be involved in the JPR research project. The unique way in which it will match individuals with research projects represent a welcome change. As a person with Parkinson’s, I find trawling websites for research opportunities stressful and laborious, the JRP@Research +Me registry will revolutionise the way in which people like me find out about research opportunities. I am excited by this development and look forward to using it in the near future.”
Kate said: “As a carer for someone with Parkinson’s it is difficult to find opportunities whereby myself and my husband can get involved in research.
“We are both keen advocates for research and have been involved in multiple research projects over the last 8 years. The issue is finding out about them; it often involves trawling through newsletters, research update emails or using search engines to try and find out about potential opportunities.
“The JPR registry will be such an asset as Phil will be able to be matched to research as it comes online; he will be able to register his interest and ensure that he can continue helping with research going forward.
“We have a ‘one stop shop’ for patients and healthcare professionals. It eliminates the need to have to look for the research opportunities available. Being involved in this project from inception has given me an insight as to what is involved in the setting up of trials, it’s exciting times ahead! JPR will ensure that Parkinson’s research can continue in an efficient way; finding better drugs to manage symptoms and also finding a cure.”
Find new treatments
Prof. Carroll, who is also an honorary consultant neurologist at University Hospitals Plymouth NHS Trust, said: “Having the opportunity to take part in research is such an important part of care. We know that people who take part in research have better health outcomes.
“Unfortunately not everyone has this opportunity, particularly those from under-served and minority groups. We hope that this registry will enable many more people with Parkinson’s to sign up for clinical research studies, and in this way speed up our ability to find treatments that work for everyone, and improve the lives of people living with Parkinson’s.”
Prof. David Dexter, Director of Research at Parkinson’s UK, said: “Part of our mission as Parkinson’s UK is to push promising research forward, but we’ll only get there if everyone is part of the research journey.
“We need as many people as possible to be involved, especially from harder to reach and under-represented communities.
“We’re pleased to provide funding and support to the JPR@Research+Me registry, which should help make it easier for people with Parkinson’s and their loved ones to connect to research opportunities, so we can ensure future treatments are available to all.”
Helen Matthews, CEO of Cure Parkinson’s said:
“We know the importance of registries collating the opportunities for people to take part in research.
We are delighted that Join Parkinson’s Research will allow potential participants to be informed about the Parkinson’s research that is happening locally to them and how they can participate. We hope that as it grows, Join Parkinson’s Research will become a vibrant community of participants who are able to access the studies that are right for them.”
The project has received funding from the Parkinson’s UK Excellence Network and NIHR South West Peninsula Regional Research Delivery Network.
- The development of JPR has involved people with Parkinson’s, researchers from the Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease Initiative, MRC Clinical Trials Unit at University College London (MRC CTU at UCL), University of Plymouth and NHS research delivery teams to ensure it is as user-friendly as possible.
