15 Feb, 2019, 16:30 ET
NEW YORK, Feb. 15, 2019 /PRNewswire/ -- A study conducted by the National Multiple Sclerosis Society and published in the February 15, 2019, online issue of Neurology®, the medical journal of the American Academy of Neurology, shows more than twice as many people in the U.S. are living with multiple sclerosis than previously thought. The previous studies estimated the prevalence to be 400,000, but this new study shows that number is closer to 1 million.
"This study tells us many things, but one thing in particular -- twice as many people need a cure," said Cyndi Zagieboylo, President and CEO of the National Multiple Sclerosis Society.
Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The cause of MS is still unknown, and there is no cure.
As the leading organization in the MS movement, the Society recognized the need to have a more accurate estimate of the number of people in the US with MS. So, it committed the funds and began the study in 2014, which brought together some of the best experts in neurology, epidemiology and statistics. It was a complex and thorough process, using a special algorithm to search through data from a variety of sources including Medicare, Medicaid, the Veteran's Health Administration, and private insurers. The study produced three papers all of which were peer-reviewed and published in Neurology.
"This was an innovative, big data project that used information from more than 125 million health records," said Nick LaRocca, Vice President of Healthcare Delivery and Policy Research for the Society, and a co-author of the study. "Our hope is that the methods we used in this study can be applied to estimate prevalence of other medical disorders."
This new number is not a surprise to Rita Joubran, 42, of Houston, Texas who was diagnosed with MS in 2009. "This will hopefully add to the sense of urgency to help find that cure," she said. "I believe that we are stronger in numbers -- the more sisters and brothers that I have fighting with me, the better my chances of winning!"
At the National MS Society, we believe the results of this study will help us achieve our goal of a world free of MS.
Zagieboylo said this will affect all areas of the Society's work. "We must do more," she said. "We need to raise more money to fund more research; we need to fund the programs and services that help people with MS live their best lives; and we need to make sure the voices of people living with MS are heard and their rights to have quality, affordable health care are protected."
For more information on the MS Prevalence Study:
SOURCE National Multiple Sclerosis Society
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