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How my daughter’s health data is helping MS research

Katherine Bliss

Katherine Bliss has a really personal connection to MS – her daughter was diagnosed with relapsing MS four years ago. Since then, her daughter has become an enthusiastic contributor to the MS Register, so Katherine caught up with one of their lead researchers Rod Middleton, to find out what happens when you sign up.

Launched in 2011, the MS Register is based at Swansea University Medical School. And last year, the MS Society agreed another £1million of funding for the study. So it’s clear they’re doing some valuable work.

The goal of the Register is to help answer big questions, like how do different types of MS affect different people, and how does where you live affect the treatment you receive? For over eight years now the Register has been asking people with MS to complete online questionnaires, and then linking the results with hospital records (after making sure they have your consent of course). They're now really making use of this huge amount of data to begin to answer these questions.

Keeping our data safe

Given some of the horror stories we hear about people’s private data, I was keen to ask Rod whether my daughter could be sure her data was safe with them. He explains that the information is stored securely and only ever made available to researchers in other universities. And this is after an Advisory Board (made up of people with MS, neurologists and independent researchers) has had a good look at what they want to use it for.

Nothing identifiable is ever released, and data is never sold or given to any commercial organisation.

Joining up the puzzle pieces of MS

Rod tells me that so far over 16,000 people have signed up to join the study and started completing the questionnaires. This is amazing, but it's still only about one in ten of the people living with MS in the UK. He says what they really need is more people!

Every single person with MS is unique. Your age, where you live, what treatment you’re on, your medical history and many other factors. These are the puzzle pieces the researchers can join up to see the ‘big picture’.

Taking action when you’re feeling overwhelmed

When you sign up, you're invited to fill out a questionnaire once every six months. I asked my daughter how much time it takes up - especially as she has a busy job and a toddler to look after! She says they're simple multiple-choice questions, and you can do them on a computer or smartphone.

She told me that sometimes she feels overwhelmed by her MS diagnosis. But she knows that by doing this, she is doing something positive to help everyone with MS.

Real impact for people with MS

Data from the MS Register helps researchers make discoveries that fuel campaigns for fairer government policy, and improved healthcare for everyone living with MS in the UK.

Visit the MS Register website to find out more