Using the UK MS Register in research

What is the UK MS Register?

Since its launch in 2011, over 17,000 people have joined the UK MS Register. The Register collects data from:

1. People with MS who directly record information about their MS via questionnaires every 6 months
2. Clinical data from the same people with MS, linked through their NHS medical records, from over 40 partner sites
3. Routinely collected NHS data e.g. via the SAIL databank

You can read more about the MS Register on their website

This linked longitudinal data helps us to:

• establish patterns over time
• understand the relationship between risk factors and the development of MS
• assess the outcomes of treatments

Since its launch, we’ve invested nearly £4 million in this valuable piece of research infrastructure to develop our understanding of MS.

What is the Register aiming to do?

In addition to the benefits for people living with MS, the Register is:

• Providing world-class datasets for the MS research community
• Providing an accessible and efficient way to collect information from people with MS
• Developing an accurate model of the impact and effect of MS on people’s lives in the UK
• Building a strong body of evidence for campaigns towards fair, relevant policies and improved healthcare for people with MS

How can I use the Register in my research?

You can use the Register in your research in several ways:

• You can use the data in your study, or develop a study around the Register data
• You can host a questionnaire on the web platform to collect information from people affected by MS
• You can use the Register to recruit participants to your clinical trial

Visit the UK MS Register website to find more details on applying to use the Register.

Find out more about how the Register has supported our funded research to develop CRIMSON – an online disease modifying therapy (DMT) decision aid to support people with relapsing MS. 

Applying to us for funding if your project is using the MS Register 

You can apply for any of our Awards with a research project that is using the MS Register. All projects must be reviewed and approved by the UK MS Register’s Scientific Steering Committee (SSC). But the timing of this approval in relation to our submission deadlines depends on the Award type.

Data Discovery Awards 

All Data Discovery awards have to use data from the Register. But they have a different process for approval than other award types.

Find out more about Data Discovery Awards and read the Applicant Guidance on our funding page.  

Other Awards: Project Awards, Catalyst Awards, Career Development Awards 

You can also apply to our other Awards with projects using the MS Register, including Project Awards, Catalyst Awards and Career Development Awards. But if you’re planning to use the Register for one of these Awards , you must make sure that the SSC has reviewed and approved your proposal before you submit  to us.  

Confirmation of SSC approval must be attached to your application. This can take time, so you must factor this in when working towards our submission deadline. You can find out more about the SSC approval process (including SSC meeting dates and deadlines) on the MS Register website.  

A brief outline of the process is provided below: 

1. You complete an application scoping form and submit to the Register 
2. You have a phone or email discussion with the MS Register Team  
3. MS Register Team completes an application Review form, which they’ll send back to you. If your project is suitable you’ll be invited  to complete a Scientific Steering Committee Application form. 
4. You submit the completed Scientific Steering Committee Application form and Review form from the Register Team to the SSC for review at a quarterly meeting (you must check the SSC meeting dates and deadlines  and allow enough time for SSC review before you submit your funding application to us). 
5. Decision communicated to you. And you can submit your application to our Award schemes.