April 2, 2020 | Support
MS data sharing during the coronavirus pandemic
The MS Data Alliance (MSDA) and the MS International Federation (MSIF) with its members, have teamed up to lead a global data sharing initiative for COVID-19 in people with MS. They are calling on individuals and organisations across the global MS movement to get involved.
Multiple Sclerosis New Zealand is proud to be part of the MSIF movement’s efforts in spearheading this vital initiative with the MSDA.
Data to drive clinical decisions
As the COVID-19 pandemic unfolds across the globe, the demand for data on the impact of the coronavirus on people with MS is rapidly growing. This information is crucial for people with MS and clinicians to make evidence-based decisions on how to manage their condition during the pandemic. Critically, people with MS want to know if the different disease-modifying therapies for MS place them at an increased risk of developing severe COVID-19 symptoms.
Current advice for people with MS on the COVID-19 pandemic can be found on the MSNZ website: https://www.msnz.org.nz/covid-19-advice-for-patients/. The guidance will be updated as more data becomes available.
Sharing data to find answers faster
Efforts are already underway in a number of countries, with several MSIF members already collecting data on COVID-19 in people with MS. Many existing MS registries are developing COVID-19 protocols to gather information from clincians or people with MS or both. The global data sharing initiative will enable these independent efforts to combine data in a central global platform kindly provided by QMENTA. By looking across COVID-19 cases from many countries, we will be able to find answers faster, which will help save lives.
Whether you are a person with MS, a healthcare professional, an MS advocate or from industry, you can all play a role in helping this initative to generate vital insights. Find out more about the project and how you can get involved at www.msif.org/covid19data.
If you are diagnosed with COVID-19 and have MS please contact us at firstname.lastname@example.org so we can ensure everyone is captured.