COVID-19 & MS data sharing : for healthcare professionals
Last updated: 8th April 2021
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
- COViMS Registry: open to clinicians across North America- open now
- UK MS Register COVID-19 CRF: for UK clinicians for laboratory confirmed COVID-19 cases only – open now
- German MS Register COVID-19 survey: for clinicians already part of the German MS Register – open now
- Australia and New Zealand COVID19 Data Set: for Australian and New Zealand neurologists – open now
- RELACOEM: open for Spanish speaking clinicians in Latin American countries – open now
- Neurotransdata (NTD): for German clinicians that are members of NTD – open now, link by email to members
- The Danish Multiple Sclerosis Registry: open for Danish clinicians – open now
- REDONE.BR – Brazilian Registry of multiple sclerosis and neuromyelitis optica spectrum disorders: open for Portuguese speaking clinicians anywhere in the world – open now
- Bulgarian SmartMS COVID-19 data set: for clinicians in Bulgaria – open now
- MSBase COVID-19 Substudy: for reporting anywhere in the world from MSBase centres – open now
- OptimiseMS: Open to participating centres across UK – open now (participating centres will be sent instructions directly)
- Centre d’Esclerosi Múltiple de Catalunya (CEMCAT): open for clinicians across Catalonia
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 anonymous case information directly into the central global platform kindly provided by QMENTA using this link. This represents a rapid data collection mechanism for the minimum COVID-19 and MS data set.
Download more information on the global data sharing initiative.