A new research project born out of the current COVID-19 pandemic will track the moods of people with multiple sclerosis (MS) over time to monitor its effect on accelerating the progression of the disease.

Researchers from the Nottingham MS Research Group are working with colleagues at the MS Society, Imperial College London, Swansea University and the UK Multiple Sclerosis Register to examine the effect of COVID-19 on people living with MS. The pioneering new collaboration encompasses two projects, one of which has already started sharing findings as the data sets have been analysed, to provide real-time results and reduce the delay it can often take research to benefit patients.

The project includes a sub-study to explore how COVID-19 is affecting the mood and psychological wellbeing of people with MS. This is important because this kind of pandemic, and the associated loneliness caused by isolation, can lead to future mental health problems for many. As it is acknowledged that high levels of mood problems can be associated with MS relapses, the research teams want to urgently track people’s mood, and find ways of helping them deal with these problems.

Over 4,000 people living with MS have already taken part in the main study and are followed up fortnightly by the research team. These regular, real-time, updates will enable people to know whether or not they are at greater risk of developing COVID-19 than the general population, and if they have COVID-19, whether their outcomes are worse. These results will be based on real-world data, provided freely and very rapidly. Anyone who signs up to participate in the research project will be followed during the pandemic and for some time afterwards too.

Dr Nikos Evangelou (Neurologist, University of Nottingham School of Medicine) and Roshan das Nair (Professor of Clinical Psychology and Neuropsychology, Institute of Mental Health/University of Nottingham) co-lead the Nottingham MS Research Group, an interdisciplinary collaboration between the University of Nottingham, Nottingham University Hospitals NHS Trust and the Institute of Mental Health.

As an expert in psychological wellbeing in neurological conditions and a leading specialist in MS research in the UK, Professor das Nair explained the significance of the new study:

“We know that people with MS have higher rates of mood problems, particularly anxiety and depression, than the general population. We also know that these mood problems have a negative impact on people’s disease (by increasing the chances that they will have a relapse, or having less engagement with healthcare services or treatments) and their lives (by affecting their ability or interest in working, socialising, etc.). If left untreated, these problems can get worse over time, and get more difficult to treat. The results of this new study will help provide the right support, at the right time, for people living with MS.”

Dr Susan Kohlhaas, Director of Research and External Affairs at the MS Society, said:

“Over 130,000 of us live with MS in the UK and, while this is a time of uncertainty for everyone, many people with MS are especially vulnerable. Although having MS in itself does not increase your risk of getting COVID-19, it can mean an increased risk of infection or severe complications. We’re doing everything we can to be there for the community, but we know lots of people are worried and confused. This study will allow us to understand how the virus is really affecting those living with MS, provide better recommendations on treatment moving forward, and support people as best we can during this difficult time.” 

Rod Middleton, Project Manager and system architect praised the work of the collaborative research team:

“Having established the MS Register in 2011 and carried out a number of important epidemiological and clinical studies in MS, Swansea University Medical school is delighted with the response to this sub-study on COVID19. We have always focused the MS Register on being relevant to the needs of people living with MS and researchers. Our ability to respond quickly to this pandemic is a credit to all of our participants, partner NHS sites, the Register team at Swansea and our collaborators on this study.”

If you have MS and concerns about COVID19 please consider joining the MS register study to help researchers understand its impact at: www.ukmsregister.org