COVID-19 and MS - Global Data Sharing Initiative

#DataSavesLives – #MSCOVID19

As the COVID-19 pandemic unfolds across the globe, the demand for data on the impact of the novel coronavirus 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 have teamed up to set up a Global Data Sharing Initiative and are calling for individuals and organisations across the global MS movement to get involved.  


Follow our progress and sign up to our mailing list to receive regular updates on the initiative.

Find out how you can help!

Download pdf for more detailed information on the Global Data Sharing Initiative.


We aim to scale-up COVID-19 data collection efforts

To scale-up data collection on COVID-19:

  1. We recommend the implementation of a COVID-19 core dataset in as many different registries and data initiatives;
  2. We encourage people with MS and health care professionals to participate in one of the COVID-19 in MS initiatives;
  3. We provide a user-friendly and fast pipeline to share COVID-19 datasets into a central platform (a French & Spanish version are provided).

Follow the progress of our data collection efforts via this link.

We achieved insights to support care during the pandemic

Risk factors for worse COVID-19 outcomes in people with MS are:

  1. Older age
  2. Progressive MS phenotype
  3. Higher disability

Additionally, we demonstrated consistent associations of rituximab with increased risk of hospitalization, ICU admission, and requiring artificial ventilation, and ocrelizumab with hospitalization and ICU admission, suggesting their use may be a risk factor for more severe COVID-19.

In February 2021 the scientific paper entitled “Associations of DMT therapies with COVID-19 severity in multiple sclerosis” was submitted in Neurology (currently under review) and the pre-print on MedRxiv of the paper can be found on this link.

These findings were taken into account in the MSIF’s Global COVID-19 advice for people with MS.

Members of the Analysis Task Force:

MSIF representative: Nick Rijke
MSDA representatives: Liesbet M. Peeters, Yves Moreau, Edward De Brouwer
ECF representative: Gilles Edan
– Expert epidemiology group 1: Jan Hillert and Tim Spelman
– Expert epidemiology group 2: Tomas Kalincik and Steve Simpson-Yap

We aim to act as a stimulus to steer ongoing and scientific research

We believe in-depth analyses of population-based data sources including history and follow-up information will be required to address some research questions regarding, amongst others, DMT’s as contributing factors, or the long-term effect on MS progression of having had a COVID-19 infection, which will require a longer-term follow-up.

In order to facilitate possible future collaborations between different MS registries/initiatives regarding research on COVID-19 vaccinations, we did a mapping exercise. More information can be found here.


Thank you to all those who have contributed to the GDSI initiative