The UK Multiple Sclerosis (MS) Register is not only celebrating a decade of vital data collection and research, it has also secured another £2 million of funding.
The UK MS Register, based in Population Data Science in Swansea University Medical School is a world-leading research project in MS that uses real world data as part of its comprehensive approach to data collection.
Since its launch it has produced more than 40 scientific papers produced in peer reviewed journals and now it has been awarded an additional five years of funding by the MS Society to further develop its work.
Rod Middleton, principal investigator of the UK MS Register, said: “Five more years of funding from the MS Society will enable the UK MS Register to push forward on our own research, enable us to collaborate with many more MS researchers and to ultimately improve people with MS’s lives.
“The dedication of our 43 NHS partner sites in collecting clinical data for linkage has also been fundamental in the project being such a success.”
As part of its 10th anniversary celebrations the UK MS Register is hosting its first ever Datathon – which sees examples of the project’s rich longitudinal data explored by early career MS researchers.
The event takes place in the lead-up to the MS Society’s prestigious scientific conference MS Frontiers, which being held at the University’s Bay Campus.
The UK MS Register aims to increase understanding of MS in UK, improve access to personalised medicine and support clinical trials while at the same time acting as a useful tool for people with MS to monitor and manage their condition.
Professor Cathy Thornton, Human Immunology and Head of Swansea University Medical School said: “We are immensely proud of what the UK MS Register has achieved over the past 10 years. It has become a one-stop-shop for MS Research in the UK and the ever-growing number of participants is a testament to its increasing usefulness as a tool to people with MS.
“It recently won an award for Outstanding Contribution to Research in the Covid-19 Pandemic at the University’s Research and Innovation Awards, recognising the rapid access to a large population people with MS offered by the register and the wealth of national and international collaborations this has enabled. We look forward to following outcomes from the next five years and beyond.”
Dr Emma Gray, Assistant Director of Research at the MS Society, said: “We’re delighted to have committed to raising an additional £2 million for the UK MS Register, and are excited to see how it will evolve, especially as the project is supporting the first ever multi-arm, multi-stage trial for progressive MS, Octopus. This revolutionary trial will transform the way we test treatments for progressive MS and could deliver life-changing new treatments up to three times faster.”
The UK MS Register is not only becoming one of the leading places for research, but it is also an increasingly useful tool to people with MS to monitor their own condition.
Linnetta Caley is the UK MS Register’s longest-standing participant, taking part in more than 200 surveys over the 10 years. She said: “When I first starting filling out the surveys I found it emotional to talk about my MS, but now I use them as a journal and note down my day-to-day. It’s great to see how my insights are being used and I hope by filling out the surveys people with MS will get the help and support they need.”
For press enquiries please contact: Katie Tuite-Dalton Senior Impact and Engagement Officer, Swansea University
About the UK MS Register
• The MS Register is the world’s first register, for any condition, to combine
information from people about their MS, with clinical and NHS data
• There are over 17,000 members on the register
• It’s an invaluable resource for researchers to better understand MS
• For more information, visit //://ukmsregister.org
About the MS Society
• The MS Society is here to make life better for people with MS, through research, campaigning and support
• For information about MS or to donate visit www.mssociety.org.uk
About multiple sclerosis
• Over 130,000 people live with multiple sclerosis (MS) in the UK
• MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think
• It’s relentless, painful and disabling
• Research has got us to a critical point. We can see a future where nobody needs to worry about MS getting worse