COVID-19 & MS: Global Data Sharing Initiative

As the COVID-19 pandemic unfolds across the globe, the demand for data on the impact of the novel coronavirus virus on people with multiple sclerosis (MS) grows rapidly. This information is crucial for people with MS and clinicians to make evidence-based decisions on how to manage their condition during the pandemic or in case of a COVID-19 infection.

MS Data Alliance and the MS International Federation with its members, are spearheading a global data sharing initiative and are calling on individuals and organisations across the global MS movement to get involved.

How can you help?

Click one of the buttons below to find out more.

I have MS    I am a healthcare professional    I am a data custodian    I work or volunteer at an MS organisation

Download PDF for more information on the Global Data Sharing Initiative.

Frequently asked questions

So how does it work?

The global data sharing initiative has a central data platform, kindly provided by QMENTA, which can receive anonymous data on people with MS and COVID-19. Data collected through national MS registries can be securely shared, or clinicians and people with MS can enter their data directly into the central platform.

The data sharing processes and central platform comply with  E.U. wide General Data Protection Regulation. National and regional registries work within local regulations regarding data protection.

How will the data be used?

In the short term, information on COVID-19 in people with MS collected through these registries will be shared anonymously with the secure QMENTA platform. Data from around the world will be combined and used to address questions such as:

• What is the risk of a person with MS having a more severe case of COVID-19? Does this differ from people without MS?
• Does taking a particular disease modifying therapy put a person with MS at an increased risk of developing a severe case of COVID-19, or conversely do any MS treatments reduce the risk of severe COVID-19?
• Can we identify factors that can predict severe complications from COVID-19 in a person with MS – are these any different to the general population?

In the longer term, sharing data could help answer questions about the interaction between MS, disease modifying therapies for MS and treatments or a vaccine for COVID-19.

The first step is to work with epidemiologists who can assure us that the global COVID-19 and MS data is of sufficient quality to inform treatment decisions. At this point we will begin sharing the emerging insights widely with clinicians, people with MS and MS organisations all around the world to start answering their questions.

We are working to enable this to happen as quickly as possible during the pandemic but can only begin when we are confident in the quality of the findings.

How can I stay up to date with developments?

If you want to receive regular updates on the initiative, please sign up to the mailing list here: www.msif.org/covid19updates. These updates will be technical and so are primarily for researchers and people working in data registries, however anyone is welcome to sign up.