Swansea University’s Online Register Of People With MS In The UK

An online register which aims to map multiple sclerosis (MS) suffers across the UK could improve care, services and aid research, according to experts.

The Swansea University project will capture details of those living with MS such as when they were diagnosed, their symptoms and help they receive.

The MS Society said by knowing more about how people are affected, care and research can be targeted better.

It is estimated 100,000 people in the UK have MS.

The society said it was the most common disabling neurological condition affecting young adults.

The register has been launched to mark the start of MS Week.

It is hoped the data, which will remain anonymous, will ultimately map every person with MS in the UK to develop an accurate picture of the impact of the condition.

Hospital staff at five pilot cities, Belfast, Edinburgh, Swansea, Nottingham and London, will add clinical data provided by neurologists and routine NHS information.

This will then be rolled out across the UK.

David Ford, who is leading the project at Swansea University, said it would provide new evidence to present to government and anyone working in the field for more targeted funding and support.

He said: “The MS Register has the potential to revolutionise the way MS research is conducted in Wales and across the UK.

“It could mean better access to clinical trials or new treatments.”

Beatable

Judi Rhys, of MS Society Cymru, said at the moment there was no cure for MS, the cause was uncertain and there were few effective treatments.

But she said the register would only work if enough people with MS took part.

“Having MS can be devastating and robs some people of the best years of their lives,” she added.

“Access to treatments and services for many is a daily battle.

“We are confident, with the right investment, MS is beatable within our generation and that’s why the MS Society is launching the MS Register.

“We urge everyone with MS to sign up.”