Uniting to find answers during the coronavirus pandemic

The COVID-19 and MS global data sharing initiative unites over 20 partners under one shared mission: to find answers that can inform MS clinical management during the pandemic.

Led by the MS International Federation and the MS Data Alliance, the initiative is encouraging the collection and sharing of data on COVID-19 in people with MS from all around the world. Combining data from national registries and studies will give us the power to answer the questions that matter to people affected by MS. In particular, we want to understand whether different disease-modifying therapies can affect the severity of a COVID-19 infection.

The mission and approach of the initiative has been published in the Multiple Sclerosis Journal 

The approach has been to work with existing MS Registers where possible, rather than setting up an independent international study. This makes the best use of existing infrastructure and encourages high quality data collection at a national level, while still enabling us to compare and pool data across the world.

Pooling and comparing data globally

Agreeing what data to collect and sharing it internationally at such speed is a huge undertaking. Yet, we have seen a tremendous response from across the MS community, with neurologists, registries, researchers and patient organizations pulling together to overcome many barriers.

In some countries, new data initiatives sprung up for the first time. For example in Latin America, Associação Brasileira de Esclerose Múltipla in Brazil and Esclerosis Múltiple Argentina both set up projects to collect information on COVID-19 directly from people with MS in Portuguese and Spanish, respectively.

Inclusive data sharing

To make the initiative as inclusive as possible, we also developed the option for clinicians and people with MS to report cases directly into the global platform. For people with MS this can happen in English, French or Spanish.

At the start of July, the global data set includes information on 9859 people with MS. We are currently cleaning and analysing the data. As soon as we are confident in the robustness of the global results, we will release them to the MS community.

You can keep up to date with the initiative by signing up to the COVID-19 and MS global data sharing newsletter: www.msif.org/covid19updates