UK MS Register News. Published 26th June 2026
This year, the UK MS Register is celebrating its 15th anniversary! Launched in May 2011, the study has gone from strength to strength. Here are 15 of our key achievements over the last 15 years:
1. Published Papers
Over 15 years, we have collected a huge amount of data from people with MS – over a million completed questionnaires! So what do we use this data for? Well, we publish papers in research journals. So far we have had:
- 22 papers published by the UKMSR team.
- 54 papers published by other researchers using Register data or with the support of the Register team.
To read more, you can view the Publications section of our website.
2. Number of Clinical Sites
In December 2011 the Register gained ethical approval to start collecting data from the clinical records of people with MS. Originally this was piloted at Morriston Hospital, Swansea, Queen’s Medical Centre, Nottingham, Belfast City Hospital, and St Mary’s Hospital, London, but has since expanded and today the Register works with over 50 clinical sites across the UK. By collecting information directly from people with MS through questionnaires, and having the ability to link this with their clinical records, the Register has generated an incredibly rich data resource which is actively used in research.
3. Number of Participants
There wouldn’t be a UK MS Register without our participants – the people with MS who choose to sign up online, or through their clinical site. Since engaging our first participant in 2011 the Register has expanded significantly. There are currently 29,676 online participants and 22,362 clinical participants, meaning in total over 52,000 people with MS have signed up to the Register! The MS Society estimate that over 150,000 people in the UK have been diagnosed with MS – this means we have reached a third of the MS population.
4. Linked Participants
Linked participants are those who have signed up to both the website, and clinically. Information from these participants provides us with the richest data about their MS, and is incredibly useful for researchers. We currently have 7,523 linked participants.
3. Sharing our Research at Major Conferences
In 2022 Register analyst Sarah Knowles was chosen to present her work at the ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) conference in Amsterdam. Sarah presented a talk about the demographics, clinical course and pathology of late onset multiple sclerosis to an audience of 3000 at the conference. The talk highlighted Sarah’s work with Dr Owain Howell, combining UK MS Register data with neuropathology data to build a more complete picture of late onset MS (onset after the age of 50) – capturing both the lived experience and the underlying pathology of the disease when it presents later in life.
A paper detailing this work was published in 2023 in the high impact factor journal Annals of Neurology: Comparing the Pathology, Clinical, and Demographic Characteristics of Younger and Older-Onset Multiple Sclerosis
6. The Octopus Trial
In 2016 the UK MS Register was approached to partner with the Octopus trial team to host the Trial Expression of Interest platform. Led by Professor Jeremy Chataway and based at University College London this pioneering, multi-arm, multi-stage (MAMS) clinical trial is testing multiple potential treatments simultaneously for progressive multiple sclerosis (MS). Most Octopus participants enrol via their existing UK MS Register accounts, and some make use of the dedicated Expression of Interest platform. The Register team handle the participant communications for the trial. More than 4000 people have registered their interest with around 700 trialists randomised at multiple hospital sites across the UK.
Recently an international partner to the Octopus trial started recruiting in Australia, named Platypus. The code on its Registration of Interest page was jointly developed with the UK MS Register.
7. Growing the Team
In the early days of the Register the team was much smaller than it is today. Principal Investigator at launch was Professor Rhys Williams, and when he retired, Professor David Ford took over; Dr Rod Middleton became Register PI in 2021 having been the Project Manager since 2010.
Today, the Register employs a much larger team: Principal Investigator Dr Rod Middleton, Clinical Lead Dr Richard Nicholas, Senior Analysts Dr Jeff Rodgers and Elaine Craig, Analysts Sarah Knowles, Weiling Yu, and Dr James Witts. Stakeholder Engagement Officers Leah Jones and Eleanor Hubble, Administrator Sue Fitzpatrick. As well as support from Mike Bale, Hazel Lockhart-Jones, and the wider team within the Data Science Building at Swansea University.
8. Key Research into Smoking and MS
In 2022, we looked at almost 8000 thousand people who have given data to the Register about their historical smoking habits. This allowed us to conduct one of the largest ever research projects on smoking and MS. Register Senior Analyst Dr. Jeff Rodgers published a paper on this study in Brain Communications, a prestigious high impact factor journal. You can read the paper here or watch this video to see Jeff explaining his research findings.
9. Variety of Journals
The Register team work with real-world data from people with MS and look into a wide range of research topics. Research findings are often shared in scientific journals; this is a great way to share study results with the scientific community and increase the visibility of the UK MS Register. So far we have had our work published in a huge variety of publications (28 to be exact) ranging from Frontiers in Neurology to Brain Communications to the Multiple Sclerosis Journal. You can read our full list of publications on our website.
10. Industry Engagement
As well as working with researchers from Universities, the Register are sometimes approached by pharmaceutical companies. These companies are keen to work with the Register because of the direct link we have with a large section of the MS population.
We have so far worked with some of the biggest names in the industry including Novartis, Biogen, Merck and Sanofi. The Register hopes that through these collaborations the industry will gain a better understanding of the lives of people with MS.
11. International Reach
Over 15 years we have collaborated with numerous researchers based at institutions all over the world! The team also regularly attend international conferences in order to share the work of the Register. Whether giving a talk, presenting posters, or networking with other professionals in the MS community, these events are a fantastic opportunity to increase awareness of the UK MS Register. By the end of 2026 the team will have showcased the work of the Register in the following countries:
12. MS Pregnancy Register
In 2021 the UK MS Register were approached to host a Pregnancy Register. Since it’s inception it has recruited more than 350 pregnant women with MS collecting vital information on their experiences.
The Pregnancy Register team have shared their findings at some of the major conferences in the MS research calendar, including at ECTRIMS 2025 in Barcelona. You can read more about their research here.
13. Upskilling the Researchers of the Future
The UK MS Register hosts regular data workshops to equip future MS researchers with the data analysis and research skills needed to work with complex health datasets and produce high-quality, reliable research. These opportunities also help build a strong, sustainable research community that can accelerate progress towards better understanding, treatment, and care for people living with MS.
In addition the Register host internships, both within Swansea University and also via the HDR Black Internship scheme. These internships provide students with practical experience that university courses may not provide. This can be especially important for widening participation and helping talented people begin a career in research.
14. Largest Ever Study of Cognition in MS
In 2025 cognitive tests deployed using the UK MS Register formed a key part of important new research from King’s College London, Imperial College London, Swansea University, and the University of Cagliari, Italy. A paper, published by researcher Dr Annalaura Lerede, in prestigious journal Nature Communications, highlighted the importance of utilising cognitive testing when treating people with MS.
The research, the largest ever study of cognition in MS, revealed that 1 in 4 people with MS experience significant issues with cognition but little motor or physical disability. This may mean that their symptoms could often go undetected and untreated. Read more here.
15. Key MS Studies
The Register team have been involved in some key MS studies in recent years:
ADAMS – a study to understand how genes influence the risk of Multiple Sclerosis (MS) in people from different ancestral backgrounds.
Refuel MS – a tailored digital treatment to help manage MS-fatigue.
TRUSTED – a simple unified consent form which anyone with a neuroimmunological condition in the UK can complete.
15 Years of the UK MS Register – Q&A with Dr Rod Middleton