As the COVID-19 pandemic unfolds across the globe, there is an urgent need for data on the impact of the virus on people with MS who are almost universally exposed to therapies that suppress the immune system.
This project, led by Associate Professor Ingrid van der Mei, is using the well-established infrastructure of the Australian MS Longitudinal Study (AMSLS) to rapidly survey and record information on COVID-19 infection in people with MS, directly from the people with MS themselves. The surveys will take 5-10 minutes and can be completed online.
The survey aims to capture information from people with MS who have been infected with COVID-19 and those who have not. This information will be used to understand if people with MS are at an increased risk of contracting the infection or if they do, whether their outcomes are worse. Since MS medications all impact the immune system differently, we also need to understand whether being on different MS treatments changes the risk or outcome of a COVID-19 infection.
The information collected in Australia will be contributed to an international data registry set up by the MS international Foundation (MSIF) and MS Data Alliance (MSDA). This study will also complement the clinical data being collected through the ANZAN COVID-19 in MS Registry.
The information from the AMSLS registry is particularly useful to the international data collection effort during COVID-19, because it also provides high-quality detailed data on people with MS who are not infected with COVID-19 for comparison.
Further information on the AMSLS can be found here: https://msra.org.au/amsls/.
In late March 2020, the MS Data Alliance and the MS International Federation joined forces to create a global data sharing initiative aimed at providing the data needed to support decisions around the clinical management of MS during the pandemic, including the impact and associated risks of COVID-19 on the lives and treatments of those with MS.
As Australia's leading registry for people with MS, the AMSLS assisted with data collection for this vital project. The support from AMSLS participants was resounding, with 1608 participants completing the baseline survey and then going on to contribute a further 2154 follow-up surveys.
The global data sharing initiative was a success, with the rapid data collection allowing evidenced based advice to be regularly published and updated on the MS International Federation’s website. The recommendations arising from this study have been beneficial for those living with MS during the uncertain times of the COVID-19 pandemic.
In addition to this international contribution, study progress so far has been focused on increasing recruitment by supporting people with MS to have greater access to the AMSLS and participate in this research. Another positive outcome of this study has been the strengthening of ties within international registries, all working toward a common goal, which sets the study teams up for further collaboration in the future.
A research publication from this study looking specifically at the disease modifying treatments (DMTs), MS and COVID-19 is currently under review.
Updated: 31 May 2021
Updated: 07 October, 2020