- MS Research Australia has been part of a rapid data sharing program here in Australia and around the world.
- COVID-19 is a novel virus in humans which has meant it has been uncharted territory, but MS organisations around the world have collaborated to provide evidence-based guidelines for people with MS and their healthcare teams.
- If you have MS and have been diagnosed with COVID-19 please contact your neurologist to be included in the Australian registry.
Despite being physically isolated from family, friends and a normal state of affairs at the moment, we are possibly experiencing one of the biggest communal events around the world. Every person you know would have heard of COVID-19, and is in some way affected by COVID-19.
COVID-19 is a new virus in humans, so when the pandemic broke, information on the best approach and what it meant for people with MS was unknown. The neurological and medical communities quickly rallied to collaborate to ensure that the best outcomes for people with MS could be achieved.
Here in Australia and New Zealand, a number of independent neurologists working with MS Research Australia quickly established a register to follow people with MS who tested positive for COVID-19. Together we also compiled information for people with MS on what they should do in response to the ongoing pandemic – this can be found on MS Australia’s website and by staying tuned to MS Research Australia’s Facebook and Twitter pages.
The information put together for people with MS includes considerations about the different medications used to treat MS, and the important decisions facing people with MS and their medical teams with respect to treatment. Since each case of MS is unique and different MS medications have different effects on the immune system, it is important to talk to your healthcare professional before modifying your medications in any way.
Of course, COVID-19 is a worldwide pandemic and swept through several countries before it spread to Australia. With this in mind, it has been important to share clinical information internationally, and MS Research Australia has been working closely with the MS International Federation (MSIF) to make sure the best advice is accessible to people with MS around the world. This information can be found here.
MS Research Australia has also been collaborating with the MSIF and the international MS Data Alliance to ensure that all global MS data is shared rapidly. This includes data from both neurologists and people living with MS on the effects of COVID-19. By working with international organisations, we can share and analyse data on a much larger scale, making it much more powerful than coming from one organisation alone.
The novel nature of COVID-19 means that this virus has been uncharted territory, but with these shared data registries around the world, we have been able build a picture of what COVID-19 means for people with MS and use this to make the best decisions for people living with the disease.
If you have MS and test positive for COVID-19, we would like to stress the importance of contacting your neurologist to be included in the Australia and New Zealand registry. This will help people not just in Australia and New Zealand but all around the world. Data from these registries is helping create a detailed map so we can chart our way through this pandemic and ensure the best outcomes for people with MS.