In a study presented this week at ECTRIMS—the world’s largest MS research meeting—preliminary results from leading experts estimate nearly 1 million people are living with MS in the United States. This is more than twice the previously reported number, which was a result of a 1975 national study and subsequent updates. An important next step in confirming this prevalence number includes anticipated publication in a prominent medical journal.

People affected by MS, health care policy experts and researchers have long expressed the need for understanding how many people live with MS in the U.S. A scientifically sound and up to date prevalence estimate will allow us to better understand and address the needs of people with MS and accelerate our impact through advocacy and research. It can help answer such questions as the economic burden of MS on families and society, while ensuring the National MS Society is able to connect to and support all people affected by MS.

To address the gap in prevalence estimates, the National MS Society launched the MS Prevalence Initiative in 2014 with the goal of determining the best way to develop a scientifically sound and economically feasible estimate of the number of people in the U.S. who have MS. This initiative included leading experts in MS epidemiology, statistics and healthcare, who utilized administrative datasets from a variety of sources including Medicare, Medicaid, Veteran’s Health Administration, and private insurers.

More work is needed to understand all the factors that led to this increase, however the research team leading this study cites evidence that MS prevalence has increased.

Publication of the study is expected in 2018.

Click here for more background on the MS Prevalence Initiative. For more updates from ECTRIMS, click here.