COVID-19 & MS data sharing : for people with MS
Last updated: 14th April 2021
We want to hear from every person with MS whether or not you have experienced any symptoms of COVID-19. The information you provide will help us learn more about the effects of the virus in people with MS.
The insights we generate will shape the advice we can give to people with MS about their risk due to COVID-19 and whether they should make any changes to their current MS treatments. Contributing your information to this global initiative will help us find answers faster and may save lives.
The best way to take part is to join one of the MS registries or data initiatives that are participating in this global collaboration. You should only submit data to one registry. Below you can see the projects that are currently, or soon to be, up and running to collect COVID-19 information directly from people with MS. If you have taken part in any of these registries before, we urge you to submit your data on COVID-19 to the same place.
- iConquer MS COVID-19 survey: Open to people with MS anywhere in the world – open now
- German MS Register COVID-19 survey: Open to German speaking people with MS anywhere in the world – open now (further information in German is available here)
- UK MS Register COVID-19 substudy: Open to people with MS in the UK – open now
- The Australian MS Longitudinal Study: for people with MS anywhere in the world, but focus on Australian people with MS – currently not open
- Neurotransdata (NTD): Open to German patients – open now (Vitabook app required)
- ABEM – Brazilian MS Patients Association: Open to Portuguese speaking people with MS anywhere in the world – open now
- Esclerosis Multiple Argentina (EMA) COVID-19 survey: Open to Spanish speaking people with MS across Latin America – open now
- Bulgarian SmartMS COVID-19 study: Open to people with MS in Bulgaria – open now
- Cleveland Clinic Registry: Open to people with MS already in Cleveland Clinic population – open now, link by email
- Health Outcomes and Lifestyle in a Sample of People with Multiple Sclerosis (HOLISM): Open to existing participants over 66 countries – open now, existing participants will be end a link
- RADAR-CNS: Open to people with MS in the RADAR-CNS study, based in Italy – currently not open
- icompanion app: open to people with MS anywhere in the world in English, French, German and Dutch – open now. (please log in on the website to share your data or install the app on your smartphone)
If, for any reason, you do not wish to participate in any of the initiatives above, you can submit your information directly into the central global platform kindly provided by QMENTA here (English), here for Spanish (español) and here for French (français). Your information will be anonymous and will be combined with the data coming from MS registries around the world.
Tell me more
To find out more about how the initiative works, how you can take part and how your data will help us find answers faster, watch the video below with Clare Walton (MSIF) and Liesbet Peeters (MS Data Alliance).
You can also download more information on the global data sharing initiative.