UK MS Register
- Lead researcher:
- Mr Rod Middleton
- Based at:
- Swansea University
- MS Society funding:
About the project
The UK MS Register is the world’s first register, for any condition, to combine information from people about their MS, with clinical and NHS data.
Since the Register’s launch in 2011, we've invested nearly £4 million in revolutionising our understanding of MS. The Register is forming an incredibly accurate picture of life with MS in the UK. We're using this vital information to fuel campaigns for fair, relevant policy and improved health care.
The Register currently has over 17,000 members, who are asked to regularly update the information on their treatments and the impact MS is having on their lives. At the same time, the Register gathers clinical data from a number of NHS hospitals and treatment centres across the UK.
You can help us to understand more about MS. Join the Register on the UK MS Register website.
The Register aims to:
- Provide crucial information to researchers about what it’s like to live with MS
- Provide an easier way to collect information from people with MS
- Build the evidence we need to campaign for fair policies and improved healthcare
- Build a clearer picture of the true impact MS has on people’s lives
- Be a resource for people with MS to track, store, access and then share their own data with their healthcare provider.
What does this mean for people with MS?
We've already learnt a lot about MS by analysing Register data. For example:
- Researchers learned that when people with MS quit smoking, the rate at which their disability gets worse slows down, in line with people who’ve never smoked. So it’s never too late to quit.
- In one study researchers learnt that people with MS had higher levels of vitamin D than people without MS, because they were more likely to take a supplement. This early work is helping to build an important foundation for further potential research into links between vitamin D and MS.
- In another study researchers learnt that fatigue was strongly linked to changes in how MS impacts people’s physical and psychological wellbeing.
Within weeks of the COVID-19 pandemic starting, the Register was asking members about their experiences. Here are a few examples of what we’ve learnt about COVID-19 and MS, thanks to data from the Register:
- A study found that people with MS were more likely to have anxiety or depression than other people, both before and during the pandemic. And surprisingly, levels of depression and anxiety didn’t change in the early stages of the pandemic.
- There’s evidence to suggest that people with MS who have anxiety, depression or more physical disability may be more vulnerable to long COVID.
- Data from the Register has also helped us understand more about COVID-19 vaccines and their impact on people with MS. Read the latest information on MS and COVID-19 vaccines.
What is the UK MS Register doing, going forward?
The Register is currently supporting our new Octopus clinical trial for progressive MS. You can also register your interest in Octopus through the UK MS Register.
The Register aims to continue collecting data from existing hospitals and NHS treatment centres in its network, as well as increasing the number of new hospitals and centres. The team are encouraging more people with MS to join the Register, so they can gather even more information about life with MS.
The team is also continuing to work on linking the information people with MS provide online to their data in the clinic. By doing so, researchers can see how medical treatments influence everyday experiences and begin to form connections that were previously impossible to make.
How will it help people with MS?
In the long term, the Register could enable the development of new services that better meet the needs of people with MS.
Through the Register, people with MS can be partners in their healthcare, providing the evidence we need to drive vital MS research and campaign for more support.
You can find out more about the Register on the UK MS Register website, including how to sign up or contact the Register team about membership. And you can read Katherine’s blog about her daughter’s experience as a Register member.
How can you support the UK MS Register?
The UK MS Register is an essential part of our research strategy to stop MS. Thousands of people living with MS have joined already. And the Register has become an incredible resource, filled with 10 years of real-life data from people living with MS.
Your support helps the Register continue collecting data. And it could help researchers discover more patterns and answer vital questions about MS. It’s already helped researchers discover quitting smoking slows the rate of disability progression.
Will you donate to support vital MS research?