5 ways the UK MS Register is the hidden hero of MS research

Tue 08 November 2022

Dr Emma Gray, our Assistant Director of Research, explains how the UK MS Register is helping us stop MS.

Stopping MS starts with understanding MS. And to build a full picture of what it’s like to live with MS you need data about real people, in the real world. Data that goes beyond what we can learn in clinical trials.

Over 17,000 people with MS are helping the UK MS Register do just that.

1. It’s collecting data on MS you can’t get anywhere else in the world

People with MS can agree to give the Register access to their clinical records and NHS data.

When this data is combined with regular Register surveys, it gives researchers a complete view of someone’s MS. This is what makes the Register so unique. And this is the first time this has been done for MS, anywhere in the world.

They can use its data to answer questions on anything from prevention, diagnosis, treatment, measuring, or managing MS.

The Register’s got huge potential to gather data from unique groups of people with MS. It’s already using its technology to support in collecting data from pregnant women with MS. In the future, maybe we could even follow people who are at risk of developing MS before they’ve even been diagnosed.

2. It’s identifying risk factors for progression that we can act on

The Register is helping us identify risk factors that, if changed, could change the course of someone’s MS. We’re funding researchers to use the Register’s data to find more risk factors like this.

Research from the Register identified that stopping smoking can reduce the rate of disability progression. And it’s already making changes to clinical practice - neurologists in other countries are using this evidence to help their patients.

3. It’s supporting clinical trials testing new treatments to stop MS

The Register supported recruitment to the MS-STAT2 trial, which could lead to the first treatment for progressive MS that directly protects nerves from damage. And now it’s supporting recruitment to our ‘mega-trial’ for progressive MS, Octopus.

The Register can also continue to monitor the effects of a drug in the real-world after a clinical trial. It could help predict who’ll respond to treatments, tell us how to use existing treatments better, or help more people access it.

4. It’s helping develop new ways to measure MS

The Register can help find new ways to measure aspects of MS that might not have been well-monitored before.

For example, the Register showed a tool could accurately measure fatigue severity in MS. And more recently, the Register has shown a new tool can be used to measure cognitive symptoms of MS.

It’s opening up new ways to measure progression of peoples’ MS that doesn’t just look at walking scales like EDSS.

5. It’s helping people with MS talk to their clinicians

Taking part in the Register can have direct benefits for people with MS.

They can choose to look at their own data. And this means they can monitor any changes in things like their mental or general health, fatigue and mobility. This can help open up discussions with their neurologist or MS nurse to improve management of their MS.

There’s so much more for researchers to uncover from the Register. It can support all types of research to help us stop MS.

Find out more about the UK Register, including how to sign up

How can you support the UK MS Register?

Your support helps the Register continue collecting data. And it could help researchers discover more patterns and answer vital questions about MS.

Will you donate this Christmas to support vital MS research?

Donate now