The UK MS Register Needs You!

 Dr Rod Middleton, chief investigator at The MS Register, explains how you can get involved to help with medical research

The UK MS Register is a unique research project that allows people with multiple sclerosis (MS) to add their own experiences and medical information to research. The aim of the project is to help researchers to learn more about what it’s like to live with MS in the UK today.

Anyone who is over 18 and has a confirmed MS diagnosis can get involved by signing up through the website. Once signed up you can track changes in your condition over time (should you choose to) and will be asked to log back in every six months to answer regular questionnaires about you and your life with MS.

We also work with selected NHS hospitals around the UK. If you are under the care of one of these, then you can also contribute by consenting to have your medical records securely linked to the Register. We encourage people to do both these things wherever possible to because it provides the richest data about what it’s like living with MS. So far, we have had more than 20,000 people sign up.

What happens to all this data?

Data is held securely by Swansea University (where our office is based) and our team of researchers use it to look into many different aspects of MS, for example the impact of diet, differences in the age of onset, the effects of smoking on MS, and more. We also collaborate with MS researchers across the world, who can apply to work with our data. This is done anonymously, so participants are never identifiable by their data. You can read more about our research by visiting the ‘News’ pages of our website.

We are always keen to recruit new people on to the Register – so if you or someone you know has MS and isn’t already signed up, then please visit for more information. Whether you are newly diagnosed, or have been living with MS for many years, we would be delighted to hear from you. This is what Register participant Michèle has to say about being involved…

 “I’m Michèle and I have been signed up with MS Register for around 18 months. I was diagnosed with RRMS at the age of 48 in April 2020 after a sudden onset in December 2019.

I have so far completed the MS Register questionnaire on three occasions and, whilst hopefully providing some useful real-life evidence for the study, I have also found the reports and graphs produced after each questionnaire session extremely useful in understanding and monitoring my own MS Journey. Remembering exactly when symptoms manifested, their severity, and how they were impacting me both physically and mentally over time, is hard to accurately record.

My MS Register report helps give me a record of that information. This has been particularly useful when attending my annual review with my neurologist and when speaking to the MS Nurses. I can refer to the report to give accurate and true information to them as well as prompting me to not forget to discuss if I had been having new symptoms or older symptoms had disappeared. In fact, at my last review with my neurologist, I went to the appointment with a copy of my report which I gave to him. He said how useful it was to have that information and how he wished all his MS patients came with their own MS Register reports to put in their files.”

The UK MS Register launched in 2011 and is based within Population Data Science at Swansea University Faculty of Medicine, Health and Life-sciences. The UK MS Register is primarily funded by the MS Society. For more information please email