Love Data Week

Blogs, Research

The UK MS Register is a research project which collects real world data about living with MS in the United Kingdom. Whether you are a researcher who wants to use the data to answer an important question, a person with MS who wants to contribute to a study, or a health care professional who wants to find out what research is emerging from the UK MS Register, you can get involved.

We hold a wealth of data and regularly collaborate on research with researchers in the UK and across the world.

February 12th – 16th is ‘Love Data Week’ and the theme for this year is “My Kind of Data” In this blog we hear from the PI of the UK MS Register, as well as one of our research analysts, and a Register participant about what data means to them.

Dr Rod Middleton, Associate Professor Disease Registers:

“I am PI of the UK Multiple Sclerosis Register, capturing ‘real world’ data from people with MS, and from the NHS, to carry out data linkage between these and another sources of data such MRI scans and tissue data. We work in both qualitative and quantitative data, image analysis, machine learning and apply both cross sectional and longitudinal study designs to these. Research and data has always been part of my life; through my work at the Register I really see the value of data.”

Dominic Shadbolt is an MS Register participant and regularly shares his data by completing online questionnaires:

“As someone who has lived with MS for 31 years it’s great to know that by contributing my data to the  the UK MS Register it helps me manage my condition and, more importantly, is giving back to the patient community as researchers search for a cure.  It’s only through MS patients sharing our data that incredible research breakthroughs can happen. Do it for yourself and do it for others. It is painless and anonymous.”

Sarah Knowles, UK MS Register data analyst:

“Working with data is brilliant because it allows you to answer questions in an evidence based way. Getting to work with data at the UK MS register is fantastic because we’re one of the largest MS data banks in the world and we have such a wide range of data that’s collected both from clinical sites and directly from people with MS. All of this information can be used to answer really important questions and improve our understanding of disease prevention, diagnosis and treatment. I love being able to work with data in research and see the positive impact it can have in people’s lives.”

To find out more about how we collect and use data, visit our research pages.