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. 

New Data Discovery awards launching in 2022

• Funding amount: Up to £50,000
• Project duration: Up to 12 months
• Opening date: Monday 14 March 2022
• Lay summary development closes: Friday 1 April 2022
• Deadline: Wednesday 11 May 2022
• Funding outcome: August 2022

Go to our Funding page for full information on the scheme and how to apply

We’re launching our new Data Discovery awards to further our understanding of MS risk factors. We hope these will provide a more combined approach to assess someone’s risk of developing MS and ultimately help us to develop new preventative strategies.

These awards will be for up to £50,000 for one year. You must use data from the UK MS Register, either alone or with other existing datasets.

Your project should aim to do one of the following aims:

1. Uncover new risk factors for developing MS. We are particularly interested in modifiable risk factors that could be relevant for primary prevention.
2. Further characterise known MS risk factors in a way that will take us forwards towards prevention strategies. Applications addressing this aim should clearly explain how the new information produced will move our understanding forward in a way that will help the community tackle MS prevention.
3. Increase our understanding of modifiable risk factors and comorbidities that influence the likelihood of MS progression

We won’t fund applications relating to pharmacological interventions licenced for MS. You must also include public and patient involvement in the development and delivery of your project

You must submit your application via our online grants management system. For more information you can email Dr Jacqui Hanley, Research Programme Manager [email protected]