International registry provides support and answers to MS patients during COVID
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An international registry that was pivotal in the care of thousands of patients with multiple sclerosis during the COVID-19 pandemic was on show when Her Royal Highness Princess Astrid of Belgium visited The Alfred this week.
The MSBase is a neuro-immunology registry, which contains more than 93,000 patient records across over 170 collaborating clinics in 43 countries. It is used by neurologists worldwide to better understand multiple sclerosis and other neuro-immunological diseases.
Director of Neurology at The Alfred, Professor Helmut Butzkueven said specialists from across the world drew on data from the registry during the pandemic.
“We needed to better understand the safety of MS treatments, amid concern patients could be at greater risk of COVID complications because of their MS medication,” Prof Butzkueven said.
“The early spread of COVID-19 cast doubt on the safety of those highly effective, but immunosuppressive therapies for MS, and an urgent need for data arose.”
Prof Butzkueven said the call for collaboration during COVID was headed by Professor Liesbet Peeters, chair of the MS Data Alliance, based in Belgium.
“Through sharing data internationally, the MS Data Alliance was able to prove that the risks of COVID in MS patients were low, and that most people could continue their treatments safely,” Prof Butzkueven said.
The MSBase Registry contains healthcare data collected from a range of professions, health care institutions, governments and patients, and is used to improve healthcare delivery for entire populations.
After being diagnosed with MS ten years ago, Astrid Edwards' life completely changed and she was faced with a world of unknowns.
But she said being supported by Prof Butzkueven and having acessible data in real time provided significant comfort.
"From managing side effects and disease progression and changing medications, to participating in trials and then contracting COVID, the registry has given us the assurance and evidence we needed to respond with the best treatment."
The registry’s links to Belgium were established with research partner, the University of Hasselt under the umbrella of the Flander AI Research Program.
For more about The Alfred's Multiple Sclerosis and Neuroimmunology Clinic click here.
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