The UK MS Register
Prof David Ford
About the project
The UK MS Register is the first register of its kind with the ability to link information from people with MS to clinical data. The Register was launched in 2011, with the overall goal of forming an accurate picture that will revolutionise our understanding of MS.
The Register aims to:
- Provide crucial information to researchers.
- 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.
The secure and confidential MS Register website allows researchers to continually ask and analyse new questions about all aspects of MS. People that join 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.
Over its first four years, the Register has successfully collected essential data from over 12,000 people with MS, expanding our knowledge of life with MS in the UK. Information provided through the Register has already shown that the number of people with MS in employment is much lower than the general population.
Researchers also asked over 4,000 respondents about anxiety and depression, and found that half of those asked experience anxiety and half experience depression, with many experiencing both. This information highlights the unmet needs of people with MS and helps us to campaign for more support.
The MS Register now aims to expand the network to include additional hospitals and NHS treatment centres. Researchers at the Register are encouraging more people with MS to take part, so that they can gather even more information about life with MS. The team is also 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.
The difference you can make
The MS Register is allowing people to provide invaluable information on life with MS in the UK. We can use this information to fuel campaigns for fair, relevant policy and improved healthcare.
If you have any questions or would like more information please click here
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