Professor Richard Nicholas, from Imperial College London, is leading a study with the UK MS Register to understand how the current coronavirus crisis is affecting people with MS.
We know some people with MS are likely to be at risk of a higher impact of COVID-19 because of the medication they take. But at the moment, decisions about how we respond to the pandemic are based on our understanding of how DMTs work, and what we know about the virus so far.
We need data directly from people with MS so we know as much as possible about the specific effects of COVID-19 on MS.
Why do we need this study?
One of the challenges we’re facing at the moment is that only people with very serious symptoms are being tested for COVID-19 in the UK. So we're only seeing one small piece of the picture.
We don’t know the actual numbers of people with MS who are getting the virus, as some people will only be experiencing mild symptoms.
What is recall bias?
We don’t want to wait to start asking people about their experiences, because then we face a problem called ‘recall bias’. That means when we look back on our experiences over this period of time, our memories will be affected by what we know about the virus. So we’re more likely to remember having a cough for a few days, because it’s one of the symptoms we’re on the lookout for.
Through our new study, we’re collecting data right now, when people are still well or have only recently had the virus. If you can keep us updated regularly over the next few months, we’ll be able to identify when and how symptoms of the virus occur in people with MS. And then when testing becomes more widely available, we’ll be able to determine who did have the virus. We'll also be able to see whether different DMTs had a negative or positive impact on the risk of getting it, or how severe the symptoms were.
3600 people have signed up. We urgently need more.
So we’re asking everyone with MS in the UK – whatever type of MS you live with – to join this study and complete a set of questionnaires regularly over the next few months.
We’ll publish regular updates of the results so that the data will help clinicians and people with MS make decisions about their treatment in the context of the current pandemic.
As of 17 April, 3600 people with MS had already taken part. 39 of them have a confirmed diagnosis of COVID-19. It’s great to have this data, but that’s still only a tiny proportion of the people with MS in the UK. So we urgently need more people to take part to get useful results.
How do we take part?
If you're already signed up to the MS Register, your questionnaire will already be available to you when you log in.
If you're not already signed up, it only takes a few minutes to join. Either way, go to the UK MS Register website to get involved.
Every response counts.
New questions added
Updated Friday 24 April
The MS Register team have added new questions about how you’re feeling, the impact on your employment and finances, and whether you’re getting the right care and support.
Your answers help us keep making the case with the government and NHS for crucial care and support for our community. We also want to make sure we’re giving you the information, services and support you need right now. So please do take the survey!
If you've already taken the survey you can log in and take it again with these new questions.