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.  

Interested?

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 aim to achieve insights to support care during the pandemic

We aim to address the following questions:

  1. Do the proportions of severe COVID-19 outcomes in people with MS differ from those seen in the general population?
  2. Is the pattern of risk factors for COVID-19 outcomes similar compared to the general population? (e.g. age, comorbidities, … )
  3. Is there a difference in COVID-19 outcomes between untreated people with MS and people with MS who are treated?
  4. Does the type of treatment have an effect on COVID-19 outcome?

Analysis Task Force

An Analysis Task Force is installed to achieve insights into these questions as fast as possible. We welcome and encourage input from the community to support the efforts performed by the Analysis Task Force.

Please propose other urgent questions to support care during the pandemic (considering the COVID-19 core dataset)
Please provide us with links to publicly available data sources you are aware off
Please redirect us to interesting (scientific) publications you think can support the task force

Members of the Analysis Task Force:

MSIF representative: Nick Rijke
MSDA representatives: Liesbet M. Peeters, Yves Moreau, Edward De Brouwer, Daniele Raimondi
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 analysis of (population-based) data sources including history and follow-up information will be required to address some other research questions. These include, for example:

  1. Are people with MS more susceptible to COVID-19 compared to the general public?
  2. Are people with MS on a specific drug more susceptible to COVID-19 compared to the general public?
  3. What is the long-term effect of COVID-19 on the progression of the MS?
  4. What is the effect of treatment stop or switches on COVID-19 susceptibility and outcomes?

We aim to achieve methodological insights during this Global Data Sharing Initiative that can stimulate this ongoing and future scientific research led by others within the MS community.