The UK MS Register is one of the MS Society’s major investments with a total value of £2 million. It encourages people with multiple sclerosis (MS) to enter their experiences of the condition into an online portal – in turn, helping scientists and researchers understand more about MS and how it affects people.

Over 11, 000 people have joined the MS Register so far, but there are more than 100,000 people with MS in the UK – so more sign-ups are needed.

The new funding  will focus on ensuring NHS hospitals across the UK link the data they have on patients to existing data held in the MS Register, which helps to validate information.  The project is led by Associate Professor of Health Informatics at Swansea University, Kerina Jones, and project-managed by Rod Middleton, also based at the University. 

Data from the Register has already revealed new information about levels of anxiety and depression in people with MS, and about the impact of disability on employment status. This new knowledge can be used to support campaigns for fair, relevant policy and improved health care.

Joseph Carter, Director for the MS Society in Wales, said: “The MS Register is a fantastic initiative, designed to further our understanding of MS and how it affects people so we can influence science and campaigning work. We’re delighted this world leading piece of work is being led by researchers in Swansea.”

Kerina Jones said “We are extremely pleased and excited to be embarking on this next phase, as it will allow us to engage with greater numbers of NHS Neurology clinics and to enrich the data on the Register. We are grateful to all the people with MS who have already enrolled, and we want to encourage more people to take part, to build up the data for research to improve health and well-being. “

Andy Price of Llandrindod Wells joined the Register and regularly fills in an email survey on his symptoms and the effect of MS on his life. He said: “For me, the MS Register is one of the most essential studies in helping to understand the long term effects of MS on an individual. The results of the email survey must be extremely useful in the understanding of the illness.  Multiply that many thousands of times, and an accurate picture can be drawn of the ever changing effects of MS over time.”

The UK MS Register is run from the College of Medicine at Swansea University and has partner sites across the UK, including: Morriston Hospital in Swansea, the Royal Victoria Hospital in Belfast, Queen’s Medical Centre in Nottingham, and the National Hospital for Neurology and Neurosurgery in London. Professor Jeremy Hobart, from Plymouth University Peninsula Schools of Medicine and Dentistry has recently come on board as the Clinical Co-applicant and Plymouth Hospital will be the next site to become involved.

If you live in the UK, are over 18 years old and have MS, then please go to www.ukmsregister.org to join the MS Register.