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.
The project is co-led by Professor Camille Carroll at Newcastle University, NIHR Newcastle Biomedical Research Centre (BRC) and honorary consultant neurologist at University Hospitals Plymouth NHS Trust, and Professor Yan Yiannakou, consultant gastroenterologist at The Newcastle upon Tyne Hospitals NHS Foundation Trust.
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.
Prof. Carroll and other NU Parkinson’s researchers, teamed up 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 Initiative and 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, and ensure it is as user-friendly as possible.
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, this study is co-led by Prof. Carroll and Prof. Tom Foltynie at UCL; it will take place at 43 sites across the UK, including in Wales, Scotland and Northern Ireland, and 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.
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.”
Prof. Carroll 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. Foltynie said: “Join Parkinson’s Research will be a fabulous resource to connect people who are keen to participate in PD research with enthusiastic researchers across the UK. This will greatly benefit recruitment to EJS ACT-PD and effectively signpost people to the breadth of research studies and trials across the UK”.
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.”
People with Parkinson’s can sign up to the registry here or scan the QR code
Researchers, who would like to get in touch on how they can promote their studies through JPR@Research+Me can get in touch via This email address is being protected from spambots. You need JavaScript enabled to view it.
About Newcastle University
Newcastle University, UK, is a thriving international community of more than 28,000 students from over 130 countries worldwide.
As a member of the Russell Group of research-intensive universities in the UK, Newcastle has a world-class reputation for research excellence in the fields of medicine, science and engineering, social sciences and the humanities.
Its academics are sharply focused on responding to the major challenges facing society today. Research and teaching are world-leading in areas as diverse as health, culture, technology and the environment.
Newcastle is committed to providing students with excellent, research-led teaching delivered by dedicated and passionate teachers.
Newcastle University is ranked 129th in the QS World Ranking 2025 and joint 168th in the Times Higher Education World University Ranking 2024.
Newcastle University is Top 100 in the world for sustainable development in the Times Higher Education Impact Rankings 2024. Newcastle-upon-Tyne Hospitals NHS Foundation Trust
About the NIHR Newcastle BRC
The National Institute for Health and Care Research (NIHR) Newcastle Biomedical Research Centre (BRC) brings together world-leading researchers and clinicians to turn new scientific breakthroughs into treatments for patients.
It’s eight research themes offer significant impact to drive forward health improvements in ageing and multiple long-term conditions.
The Digital Health, Ageing Innovation and Inclusion Theme aims to support the wellbeing and function of patients, carers and the public through novel insights from three research programmes: Digital Biomarker Discovery Programme, Digital Health Interventions Programme and Digital Health Inclusion Programme.
The National Institute for Health and Care Research (NIHR)
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
The NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.
Research is vital to developing new treatments and better care for all. Through Be Part of Research, the NIHR’s flagship research registry, people can join studies into all health conditions, including Parkinson’s and other neurodegenerative diseases. Find out more at bepartofresearch.nihr.ac.uk/join
Be Part of Research
The NIHR has launched the nation’s biggest-ever recruitment drive for clinical trials. The aim is to sign 1.5 million people up to the Be Part of Research volunteer registry.
Be Part of Research is the first UK-wide research registry covering all health conditions. It makes taking part in vital health and care research easier than ever for patients and the public - while accelerating study recruitment for researchers.
The online service is available directly via the NHS App and forms a vital part of the Government’s 10 Year Health Plan, which will transform patient care with groundbreaking treatments, while driving growth.
The service is run by the NIHR, in collaboration with the NHS and the devolved administrations in Scotland, Wales and Northern Ireland.
The ‘research match-making service’ enables people to find and connect with suitable research that matches their needs and interests.
People choose which areas of health research they would like to take part in when they sign up. This includes studies into particular health conditions, as well as public health and social care studies. When a study is recruiting participants via the registry, potential participants who match the study criteria (based on the person’s age, sex, ethnicity and location) are sent clear information about what's involved and how they can take part if they choose to.
Over 600,000 people have signed up to the Be Part of Research registry so far. The service has been used to enroll more than 90,000 people across the UK to over 100 studies, including the UK’s first norovirus vaccine trial.
The latest data shows that many individuals and communities are missing out on the right care and support because they are less represented in research. For example, White British people are 22% more likely to take part in research. So our campaign aims to significantly increase the number of Black people, young people aged 18-24 and people of South Asian heritage to sign up, so that the numbers are in line with ONS Census data.
About University of Plymouth
The University of Plymouth is renowned worldwide for its high-quality research, teaching and innovation. With a mission to Advance Knowledge and Transform Lives, the University drives the global debate in disciplines from marine and maritime to medicine, law, computing and climate action.
With a city centre campus and further state-of-the-art facilities spread across Plymouth and beyond, plus Devon and Cornwall’s stunning coast and countryside on the doorstep, the University provides a unique blend of urban and outdoor lifestyle opportunities for everyone who studies and works here. A three-time winner of the Queen’s Anniversary Prize for Higher and Further Education – most recently in respect of its pioneering research on microplastics pollution in the ocean – Plymouth consistently ranks among the world’s leading universities for its innovation, research and teaching in relation to the United Nations’ Sustainable Development Goals.
Plymouth’s teaching and learning excellence is reflected in one of the highest numbers of National Teaching Fellows of any UK university. With over 18,000 undergraduate and postgraduate students, plus a further 7,000 studying at partner institutions in the UK and around the world, and over 190,000 alumni pursuing their chosen careers internationally, the University of Plymouth has a growing global presence.
Research at University Hospitals Plymouth NHS Trust
University Hospitals Plymouth NHS Trust has a well-established reputation for high quality research and our Research and Development team has been supporting research for more than 25 years.
Patient participation in research studies is a vital part of healthcare development. It can help to provide new treatments, diagnostic aids or services which could later be adopted across the NHS to improve patient care.
Our vision is to improve the health and wellbeing of our local population by conducting high quality research, which is relevant to the needs of our communities, by embedding research as part of our core business. The Trust is well respected for its capacity to offer the widest variety of research studies in the Peninsula and continues to provide research in all clinical areas.
To find out more about research opportunities at University Hospitals Plymouth NHS Trust either as a researcher or participant, ask your health care professional or contact the Research and Development team.
If you are interested in taking part in research at UHP, you can find the studies we are currently running on the Be Part of Research website. About University College London
About the MRC Clinical Trials Unit at UCL (MRC CTU at UCL)
The MRC CTU at UCL is at the forefront of resolving internationally important questions in infectious diseases, cancer and neurodegenerative diseases by delivering swifter and more effective translation of scientific research into patient benefits. The MRC CTU at UCL carries out challenging and innovative studies, and develops and implements methodological advances in study design, conduct and analysis. Furthermore, one of the key goals of the MRC CTU is to build strong networks for capacity building, training and knowledge transfer. The MRC CTU is part of the Institute of Clinical Trials and Methodology (ICTM) which brings together the largest group of trialists in Europe. For more information, see the MRC CTU at UCL website: https://www.mrcctu.ucl.ac.uk/about-us/.
About UCL
UCL is a diverse global community of world-class academics, students, industry links, external partners, and alumni. Our powerful collective of individuals and institutions work together to explore new possibilities. Since 1826, we have championed independent thought by attracting and nurturing the world's best minds. Our community of more than 50,000 students from 150 countries and over 16,000 staff pursues academic excellence, breaks boundaries and makes a positive impact on real world problems. The Times and Sunday Times University of the Year 2024, we are consistently ranked among the top 10 universities in the world and are one of only a handful of institutions rated as having the strongest academic reputation and the broadest research impact. We have a progressive and integrated approach to our teaching and research – championing innovation, creativity and cross-disciplinary working. We teach our students how to think, not what to think, and see them as partners, collaborators and contributors. For almost 200 years, we are proud to have opened higher education to students from a wide range of backgrounds and to change the way we create and share knowledge. We were the first in England to welcome women to university education and that courageous attitude and disruptive spirit is still alive today. We are UCL.
www.ucl.ac.uk | Read news at www.ucl.ac.uk/news/ | Listen to UCL podcasts on SoundCloud | View images on Flickr | Find out what’s on at UCL Minds
About the Parkinson’s Excellence Network
The Parkinson’s Excellence Network is the driving force for improving Parkinson’s care. Through tools and education, it connects and equips health and social care professionals to provide the services people affected by the condition want to see.
Currently around 7,000 health and care professionals are signed up to the Network. This includes joining their local regional network or a specialist interest group. With the support of Parkinson’s UK, it links key professionals together and involves the voice of people affected by Parkinson’s, bringing new opportunities to learn from each other and work together for change.
Visit parkinsons.org.uk/excellencenetwork or follow @ParkinsonsEN.
Sign up for the Excellence Network newsletter.
About Cure Parkinson’s
We’re here for the cure. Cure Parkinson’s is working with urgency to find new treatments to slow, stop and reverse Parkinson’s. Our funding and innovation has redefined the field of Parkinson’s research, enabling the world’s leading researchers to prioritise the next generation of drugs for clinical trial. Together we will conquer Parkinson’s.
Further information at cureparkinsons.org.uk
Cure Parkinson’s is the operating name of The Cure Parkinson’s Trust. The Cure Parkinson’s Trust is a registered charity in England and Wales (1111816) and Scotland (SCO44368) and is a company limited by guarantee – company number 05539974 (England and Wales).