Belgium’s HRH Princess Astrid visits Monash-hosted Multiple Sclerosis data registry that is helping patients worldwide
HRH Princess Astrid of Belgium (fifth from right) visiting the MSBase Registry at The Alfred.
Her Royal Highness (HRH) Princess Astrid of Belgium yesterday toured the Monash University-hosted Multiple Sclerosis (MS) MSBase Registry that is innovating the use of health data to improve the treatment and lives of people with MS across the world.
The only international registry of MS patients, the MSBase Registry operates out of the Monash Central Clinical School based at The Alfred and contains more than 92,000 patient records across more than 170 collaborating clinics in 43 countries.
The MSBase Registry played a crucial role during the COVID-19 pandemic in a Belgium-led international collaboration to rapidly establish that most MS patients globally were safe to continue with their critical treatments amid early concerns their treatments could put them at greater risk of COVID-19 complications.
The success of the MSBase Registry brought it to the attention of health authorities in Belgium as a successful case study of the effective use of health data to improve patient outcomes. HRH is in Australia as part of the 2023 Belgium Economic Mission to Australia to promote business and academic collaborations, including in the innovative use of healthcare data.
“Healthcare data is gathered daily by a broad range of professions, healthcare institutions, governments and patients,” said Monash University Interim President and Vice-Chancellor Professor Susan Elliott AM. “This real-world data holds valuable information that can be responsibly used to gain new and valuable insights to improve the delivery of healthcare."
"The MSBase Registry is a leading example of the excellent use of health data, and Monash is proud to be the host organisation with our clinical partners The Alfred. It underlines Monash’s commitment to addressing global challenges through purpose-driven research and innovation to deliver tangible and significant outcomes,” Professor Elliott said.
MS is a complex condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It affects more than 33,300 people in Australia and nearly 3 million people globally. Although treatments have improved significantly, researchers are yet to uncover its cause or discover a cure. Most patients will require lifelong treatment to minimise the disease’s progression.
MSBase Registry managing director Professor Helmut Butzkueven said that during the early phase of the COVID-19 pandemic there was great anxiety in the MS health community because many people with MS are treated with highly effective therapies that nevertheless suppress the immune system.
Professor Butzkueven, who is also the van Cleef Roet Chair of Neuroscience in Monash’s Central Clinical School and Director of Neurology at The Alfred, said “the urgent question we needed to answer was whether MS patients should keep taking their medications and risk potential complications from COVID-19, or suspend treatment at the risk of severe relapses and permanent disability?”
The Belgium based MS Data Alliance responded by issuing an urgent call for international data on the risks COVID-19 posed to patients, and the MSBase Registry was quick to respond.
“We rapidly developed case forms, and quickly started sharing outcomes data that allowed the MS Data Alliance to quickly show that the risks of COVID-19 in MS patients were low, and that most people could continue their treatments safely,” said Professor Butzkueven.
The MSBase Registry is part of The Alfred Precinct which brings together eight independent organisations, including medical research organisations, universities and a health service provider, to create a community of excellence for medical and health research and education.
Following HRH’s visit, researchers and policymakers from Belgium and Australia met together in a symposium at The Alfred on the future of medical data management, security and evidence generation. The knowledge and experiences of both countries will inspire future academic and business collaborations to address health challenges.
About Alfred Health
Alfred Health is one of Australia’s leading healthcare services. They have a dual role: caring for more than 700,000 locals who live in inner-southern Melbourne; and providing health services for Victorians experiencing the most acute and complex conditions through 18 statewide services. Their three hospital campuses – The Alfred, Caulfield Hospital and Sandringham Hospital – as well as numerous community based clinics, provide lifesaving treatments, specialist and rehabilitation services through to accessible local healthcare.
For more information, visit their website.