How people with MS can help

 

Do you have MS? 
Find out how you can support the Global Data Sharing Initiative

We want to hear from every person with MS whether or not they have experienced any symptoms of COVID-19.
The information you provide will help us to 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 the 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.

Below 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.

Initiatives involved in the Global Data Sharing Initiative:
  • iConquer MS COVID-19 survey: Open to people with MS anywhere in the world – sign up to iConquerMS by clicking here
  • Neurotransdata (NTD): Open to German patients – open now (data to submit via the patient portal / app featured by Vitabook – i.e. a Vitabook account is needed)
  • Icompanion: Open to people with MS anywhere in the world – dataset implemented in English, French, German and Dutch – open (please log in on the website to share your data or install the app on your smartphone)
  • German MS Register COVID-19 survey: Open to German speaking patients from all over the world – open (some background info can be found here)
  • Cleveland Clinic Registry: Open to people with MS already in Cleveland Clinic population – open 
  • UK MS Register COVID-19 substudy: Open to people with MS in the UK – sign up to the MS Register by clicking here
  • Australian MS Longitudinal Study (AMSLS): For people with MS anywhere in the world, but focus on Australian people with MS – currently not open 
  • Bulgarian SmartMS COVID-19 data set: Open to people with MS in Bulgaria – open now
  • HOLISM (Health Outcomes and Lifestyle in a Sample of People with MS): Open to existing participants spread over 66 countries – open
  • ABEM – Brazilian MS Patients Association: Open to Portuguese speaking people with MS anywhere in the world – open
  • Esclerosis Multiple Argentina (EMA) COVID-19 survey: Open to Spanish speaking people with MS accross Latin America – open
  • RADAR-CNS: Open to MS patients recruited for the programme – info on the programme
Direct data upload to Fast Data Entry Platform

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. Direct data upload is available in English, French and Spanish.  
Your information will be anonymous and will be combined with the data coming from MS registries around the world.

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

Questions?  Please contact Anne Helme: anne@msif.org

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