The Join Parkinson’s Research (JPR) registry is a new online platform where people living with the condition can register to hear about the latest clinical studies.
Clinical research studies are vital to improve our understanding of Parkinson’s and help develop new treatments. However, due to a lack of awareness and opportunity, less than 5% of people living with the condition currently participate in research. Without enough people with Parkinson’s taking part, these studies become delayed and can set back the search for effective treatments.
Now, a new national registry aims to change that. The Join Parkinson’s Research registry, or JPR@Research+Me, is an online platform which will allow anyone with Parkinson’s to sign up for clinical research studies they are interested in and help speed up the development of new treatments.
The project is co-led by Professor Camille Carroll at Newcastle University, co-chair of Cure Parkinson’s International Linked Clinical Trials (iLCT) programme and Professor Yan Yiannakou, consultant gastroenterologist at The Newcastle upon Tyne Hospitals NHS Foundation Trust.
To create the registry, Prof. Carroll and Newcastle University Parkinson’s researchers collaborated with an existing and successful research register called Research+Me at Newcastle Hospitals, led by Prof. Yiannakou.
Together, they worked with people with Parkinson’s, researchers from the Edmond J. Safra Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT-PD) initiative, the MRC Clinical Trials Unit at University College London (MRC CTU at UCL), University of Plymouth and NHS research delivery teams to create the Parkinson’s specific extension called JPR@Research+Me.
Those who sign up to JPR@Research+Me will be invited to express interest in studies that may be suitable for them – those who indicate their interest can then be contacted directly by researchers to discuss next steps. People can also opt in to receive a regular newsletter about other Parkinson’s research that may be relevant.
The registry will hopefully help studies find participants and lead to quicker answers about potential new treatments.
The first study to become available on JPR@Research+Me will be the EJS ACT-PD study.
Launching in summer 2025, this study is co-led by Professors Camille Carroll and Tom Foltynie at UCL and will take place at 43 sites across the UK, including Wales, Scotland and Northern Ireland. This study aims to find a treatment that slows the progression of Parkinson’s.
The JPR team will also be working with other researchers to make more studies available for people with Parkinson’s to sign up to.
Commenting on the launch of the registry, 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.”
This was shown first on: https://cureparkinsons.org.uk/2025/07/new-registry-join-parkinsons-research-aims-to-boost-awareness-and-accessibility-of-clinical-research-studies-for-parkinsons/
