How healthcare professionals can help

Are you a healthcare professional?
Find out how you can support the Global Data Sharing Initiative

We urge healthcare professionals to start reporting on the COVID-19 status of their patients with MS. This is not just confirmed COVID-19 cases, but also people with suspicious symptoms and people with MS who report no symptoms too. You can report on both current and retrospective COVID-19 cases.

We recommend that this information is collected via one of the established MS registries or data initiatives where possible. This will enable the highest quality data to be collected which is important to inform clinical management during the pandemic but also to allow epidemiology research in the longer term.

If you already contribute data to an existing MS registry and they are set up to collect COVID-19 data, it is preferred that you submit information via this route.

The following initiatives are currently, or soon to be, open for clinicians to submit COVID-19 data:
  • Swedish MS Registry COVID-19 module: for clinicians across Sweden – open now
  • Neurotransdata (NTD): for German clinicians that are members of NTD – open now (data to submit via the NTD system DESTINY only) 
  • COViMS Registry: for clinicians accross North America – open now
  • Cleveland Clinic Registry: for clinicians capturing data on patients of Cleveland Clinic population – open 
  • German MS Register COVID-19 survey: open to clinicians who are already part of the German MS Registry – open
  • RELACONEM: Latin American countries – open
  • OptimiseMS: open to clinicians of UK participating sites – open
  • Australia and New Zealand COVID19 Data Set: for Australian and New Zealand neurologists – open now
  • MSBase COVID-19 Substudy: for reporting anywhere in the world from MSBase centres – opening soon 
  • UK MS Register COVID-19 CRF: for UK clinicians for laboratory confirmed COVID-19 cases only – open now
  • The Spanish MS Registry: for neurologist members of the Spanish Society of Neurology only – open (link is provided to all members of the Spanish Society of Neurology by e-mail)
  • The Danish Multiple Sclerosis Registry: for Danish clinicians – open
  • REDONE – Brazilian Registry of multiple sclerosis and neuromyelitis optica spectrum disorders: for clinicians of countries that use Portuguese as mother tongue – open now
  • Icompanion: open to clinicians from anywhere in the world – dataset will be implemented in Englis, French, German and Dutch  – opening soon
  • International MuSC-19 Case Reporting platform linked to the Italian MS Register: open to reporting anywhere in the world – open now(data entry manual)
  • LEOSS (Lean European Open Survey on SARS-CoV-2 Infected Patients) Registry: based in Germany, open to participating hospitals worldwide – open now
  • Bulgarian SmartMS COVID-19 data set: for clinicians in Bulgaria – opening soon
  • French COVISEP: for neurologists across France – open now (to submit data contact Yanica Mathieu)

The global data sharing initiative will bring these registries together to share COVID-19 and MS data from around the world.
The insights we generate will be shared back with the MS community, to shape the advice we can provide to people with MS about their risk from COVID-19 and whether they should make any changes to their current MS treatments.
By contributing information to this global initiative you will help us find answers faster and will help save lives.

If, for any reason, you do not wish to participate in any of the initiatives above, you can submit de-identified case information directly into the central platform kindly provided by QMENTA using this link. This represents a rapid data collection mechanism for the minimum COVID-19 and MS dataset. 

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

Questions?  Please contact: Lotte Geys: lotte.geys@uhasselt.be or, if questions about the central data sharing platform, Landon McKenna: landon@qmenta.com