FutureMS: introducing our cohort

FutureMS is a Scotland-wide project led by the Anne Rowling Clinic that was created in direct response to questions people with MS frequently ask their doctors. 

MS is unpredictable but every person newly diagnosed wants to know how MS will affect them. They have many questions including - will their disease be mild, moderate or severe?  What can be done to stop their MS progressing and improve their quality of life? What caused them to get MS (genes, environmental factors, bad luck?) What is the shared risk in other family members, and what can be done to reduce risk?

FutureMS aims to remove the uncertainty that a diagnosis of MS can bring, by capturing and studying the individual journeys of 440 people living with MS.

The 440 people who make up the FutureMS ‘cohort’ or ‘community’ represent nearly half of the people in Scotland who were diagnosed with relapsing and remitting MS between 2016 and 2019.

Profile of the FutureMS cohort

Now, Rowling Scholar Dr Patrick Kearns and colleagues have published a scientific article introducing the cohort and detailing the tests and studies that make up the FutureMS study. This is the first step in starting to address these important questions.

The geographic distribution, as shown in the illustration, shows that we have recruited people with MS from across Scotland. Three quarters of the cohort are female. The profiles of age, ethnicity and socioeconomic status broadly match those in the Scottish MS Register, which indicates that the cohort is representative of the overall Scottish population of people with MS.

Battery of tests

FutureMS participants kindly consented to undergo a battery of tests, firstly soon after diagnosis and then a year later. Participants were assigned a unique non-identifiable study number, which was used to label all paperwork and samples collected, so the data is kept anonymously.

Participants underwent detailed clinical examinations as well as answering questions on factors such as medications, lifestyle, social factors, fatigue and mood. They also underwent a brain MRI scan and were offered a retinal scan too. Blood samples were taken to investigate their genetics and the functioning of the immune system.

A unique setting

The study is virtually unique internationally: both in terms of the participation and the design of the study recruiting people right at the start of their MS journey. Scotland has been described as the world capital of MS, and certainly has a high number of people living with the condition compared to other places. The research team hope that this will allow them to make new breakthroughs. All in all a huge amount of data has been collected - now the hard work has begun for the research team to analyse it all! The data collected will be a gold mine towards understanding what factors affect the severity and symptoms experienced in MS, and hopefully will give unique clues as to what can be done to help.

Next steps - Phase 2

This cohort of people with MS across Scotland is so valuable that we don't want to stop there. We are hoping that as many as possible of our 440 participants will agree to continue to be involved, and take part in FutureMS phase 2. This will involved a similar range of tests, at 5 and 10 years after diagnosis. The research teams have already started contacting people to discuss participation and will continue to do so over the coming months.

If you are a member of the FutureMS cohort - THANK YOU! Your participation is tremendously important.

Related links

• Patrick Kearns' profile
• Read the scientific article: Kearns et al, FutureMS cohort profile: a Scottish multicentre inception cohort study of relapsing-remitting multiple sclerosis. BMJ Open, 2022. doi: 10.1136/bmjopen-2021-058506
• FutureMS (Phase 2) project page
• FutureMS (Phase 1) project page