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UK MS Register

A logo for MS Register
Lead researcher:
Prof David Ford
Based at:
Swansea University
MS Society funding:
£1,123,484
Status:
Active

About the project

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.

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 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:

Within weeks of the COVID-19 pandemic starting, the MS 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:

What is the Register doing, going forward?

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 MS 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. And you can also read Katherine’s blog about her daughter’s experience as a Register member.