A new national research registry is launched for people with Parkinson’s disease
14 Jul 2025
A national research registry has been launched for people with Parkinson’s disease. The registry will enable people with Parkinson’s to sign up for clinical research studies that they are interested in and help speed up the development of new treatments.
Parkinson’s disease is the world’s fastest-growing neurological condition. It causes difficulty with movement, such as slowness and tremor, and many other symptoms, such as depression, memory problems, bladder and bowel difficulties, and sleep disturbance. Parkinson’s gets progressively worse, and although there are treatments that can help with symptoms, these become less effective over time, and there are currently no treatments that can slow or stop progression. Clinical research studies are vital to improve understanding of Parkinson’s and develop new treatments.
Less than 5% of people with Parkinson’s take part in clinical research studies, often because they are not aware of studies, or do not have the opportunity to sign up. Many clinical research studies are delayed because of difficulty finding people with Parkinson’s to take part. It is hoped that the new registry will help match people with Parkinson’s with studies that might be suitable for them, so that studies can find participants, providing answers about possible new treatments more quickly.
The Join Parkinson’s Research (JPR) registry or JPR@Research+Me is an easy, online platform where anyone with Parkinson’s can sign up to hear about clinical studies. Those who sign up to JPR@Resarch+Me will be invited to express interest in studies that may be suitable for them. By expressing interest in a study, people with Parkinson’s can be contacted directly by researchers to discuss next steps. People with Parkinson’s can also opt to receive a regular newsletter about other Parkinson’s research that may be of interest.
The project is co-led by Professor Camille Carroll, of Newcastle University and the Newcastle Biomedical Research Centre, and honorary consultant neurologist at University Hospitals Plymouth NHS Trust, alongside Professor Yan Yiannakou, consultant gastroenterologist at The Newcastle upon Tyne Hospitals NHS Foundation Trust.
They built on the success of the existing Research+Me register at Newcastle Hospitals. Working closely with people living with Parkinson’s, researchers from our MRC Clinical Trials Unit at UCL, the Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease Initiative, the University of Plymouth, and NHS research delivery teams, they developed a Parkinson’s-specific extension called JPR@Research+Me. The new platform is developed to be easy to use, helping more people with Parkinson’s get involved in clinical trials.
The first study to become available on JPR@Research+Me will be the Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT-PD) study. Launching in summer 2025, EJS ACT-PD aims to find a treatment that slows the progression of Parkinson’s disease. The JPR team will also be working with other researchers to make more studies available for people with Parkinson’s to sign up to.
People with Parkinson’s can now sign up to JPR@Research+Me registry online or via the QR code below.
The JPR@Research+Me project received funding from the Parkinson’s UK Excellence Network and South West Peninsula Regional Research Delivery Network.
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