Atlas of MS – crowdsourcing global insights in multiple sclerosis

By Dr. Clare Walton

Multiple Sclerosis (MS) is a lifelong autoimmune condition that affects your brain and spinal cord. In some countries such as the USA, Australia and Germany, it is the most common neurological cause of disability in young adults. Yet in others such as China, India and Peru, it is considered a rare disease. Despite this widespread variability in prevalence, the latest update of the Atlas of MS, published in MS Journal finds increasing prevalence of MS in all regions of the world. In the last two decades we have seen significant progress in our ability to diagnose and treat the disease. However, with rapid and increasing globalization of multiple sclerosis, comes the enormous challenge of ensuring people with MS all over the world have access to these improvements in MS care.

With widespread variation in MS prevalence as well as limited resources or healthcare infrastructure in some countries, there is a lack of routine MS monitoring in many areas of the world. This makes the global study of MS challenging. The Atlas of MS attempts to overcome some of the challenges using a crowdsourcing approach to gather data. It is a mammoth global collaboration led by the Multiple Sclerosis International Federation (MSIF) and our member organizations. We worked with MS experts in 115 countries around the world to compile the latest epidemiology data (the who, where and how many of MS) as well as data on diagnosis, access to treatments and the provision and quality of MS care. The data is compiled, validated and provided open-source to the MS community at www.atlasofms.org to stimulate further research and enable evidence-based policy formation and advocacy efforts.

Relying only on published epidemiology data to map MS around the world would lead to significant gaps. The Atlas includes data from a range of additional sources including registries, government and health administrative data sets, electronic medical records and the opinions of experts where no other data source exists. This diversity in data collection is an obvious and significant limitation, but it increases how useful the Atlas can be for countries with lower MS prevalence or reduced research infrastructure.

In the 7 years since the last edition of the Atlas was published there have been considerable improvements in the availability and quality of MS data. In 2020, the 115 countries who supplied us with epidemiological data represents 87% of the world’s population. A reassuring 87 countries (84%) were able to cite a data source for their prevalence data, up from 65 countries (71%) in 2013. In 62 countries, the data sources provided were rated as moderate or high quality on our confidence rating scale. To further improve confidence in the Atlas data, this latest edition incorporated several new data cleaning and validation steps as well as using improved methods to calculate global prevalence. We estimate there are 2.8 million now people living with MS worldwide and find no regions of the world are exempt from the condition.

Despite improvements in data collection, there remain important gaps in our understanding of MS worldwide. Data is missing from many low income countries, including in Africa where only 56% of the population was covered by our survey responses. Where data is reported, MS prevalence is low but we cannot be sure if this indicates challenges of data collection and reporting in low income countries or a genuine lower prevalence of MS.

The Atlas of MS is testament to the tremendous level of international collaboration that exists in the multiple sclerosis field. Our paper sets out recommendations for the global MS community to collectively improve MS surveillance. This is an essential step to enable better access for all those living with MS to healthcare innovations that can change lives.

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Article details:
Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition
Clare Walton, Rachel King, Lindsay Rechtman, Wendy Kaye, Emmanuelle Leray, Ruth Ann Marrie, Neil Robertson, Nicholas La Rocca, Bernard Uitdehaag, Ingrid van der Mei, Mitchell Wallin, Anne Helme, Ceri Angood Napier, Nick Rijke, Peer Baneke
First Published November 11, 2020 Research Article
DOI: 10.1177/1352458520970841
From Multiple Sclerosis Journal

About the author

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Dr Clare Walton is currently the Head of Research at the MS Society in the UK where she oversees the research programme worth almost £5m a year. She has a PhD in neuroscience and ten years’ experience working in medical research charities. In her recent role at the MS International Federation, her team was responsible for producing the Atlas of MS 3rd Edition.