The impact of COVID-19 in multiple sclerosis: a substudy of the UK MS Register
We need to understand more about COVID-19 urgently, and you can help.
COVID-19, the coronavirus infection, is devastating the health and jobs of millions around the world, and is now in increasing in the UK with a major impact on all of our lives. People with multiple sclerosis (pwMS) are a susceptible group both due to the impact of the disease but also as a result of taking disease modifying drugs (DMDs).
There are a wide range of DMDs that reduce the ability of the immune system to respond to normal challenges, such as viruses, to varying degrees. Advice has been developed and released all over the world (including this blog) in terms how to respond to the potential immune impairment from DMDs. However, there is fine balance between immune suppression to contain MS and the potential damage that immune suppression might allow. Much of the advice is based on what we know so far about DMDs, but we need to know if this advice is correct.
We need to understand how pwMS are affected, but there are a number of real challenges that we have not as yet resolved:
- At this moment in time we can only measure if people have an active virus present at the time of the test.
- We cannot as yet measure if someone has had the infection in the past and has developed an immune response. Hopefully this test will be available in the next month.
- Currently, we do not have testing kits available in enough numbers to test everyone and in the UK, and at this time, only people admitted to hospital are being tested.
This means that understanding the true numbers of people who get the virus and have no symptoms or mild symptoms is not possible. Therefore, we get a distorted view of the impact of COVID-19 in pwMS as we only know about those who are severely affected. The problem with trying to understand if someone had symptoms once we do know if they had an infection is called ‘recall bias’ – people selectively identify symptoms in retrospect. To get over this problem we need to collect information prospectively that is before people get the virus and as they recover.
This study aims to recruit people now when they are well or if they have recently had the virus, and then follow what happens to them regularly over the next few months. This will enable us to identify when symptoms occur and what their impact is.
Once further testing becomes available, we will be able to understand how many people were truly affected and also determine whether DMDs have a negative or positive impact on the chance of getting the virus and whether they affect the severity of the infection.
To collect these data, we are using the UK MS Register based at Swansea University and funded by the UK MS Society as a platform. The UK MS Register has been running since 2011 and has signed up more than 15,000 pwMS and collects details of each person’s MS and asks them to complete participant reported measures regularly. The UK MS Register works in collaboration with 49 UK National Health Service Trusts with an MS Service around the UK. We need pwMS to register and complete a set of questionnaires and update details of their MS. These questionnaire sets will be repeated every two weeks over the next few months. We also want to contact their clinical team and be able to get the details of their test results when it is eventually done.
Figure 1. Rolling update 07.00 21st March 2020
We will generate rolling updates of these data for pwMS and healthcare professionals to inform and support decision-making about the best decisions about treatment and approach in the context of COVID-19. We have already started collecting data and as of 07:00 on the 21st March 2020, 1818 pwMS have already taken part, but need more people with MS to take part to get useful results – most recent update (Figure 1).
To take part please go to https://ukmsregister.org and sign up to the UK MS Register, or log back in if you are already registered. Every response helps.
Parallel to this survey, we are asking neurologists and MS professionals to report anonymously if any of their patients in their centres had COVID-19. This can also be accessed at https://ukmsregister.org.
By studying the results from the two surveys, we will get a clearer picture of how the pandemic affects people with MS and update COVID-19 guidelines based on real data.
Richard Nicholas, Nikos Evangelou, Katie Tuite-Dalton, Roshan das Nair, Rod Middleton, on behalf of the MS Register group and the UK MS society.