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"This study tells us a lot, 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 and often debilitating disease of the central nervous system that disrupts the flow of information in the brain, as well as between the brain and the body. Symptoms range from numbness and tingling to blindness and paralysis. The cause of MS is still not known and there is no cure.
As the leading organization in the multiple sclerosis movement, the Society has recognized the need for a more accurate estimate of the number of people with multiple sclerosis in the United States. It has therefore committed the necessary funds and started the study in 2014, which brought together some of the best experts in neurology, epidemiology and statistics. It was a complex and exhaustive process, using a special algorithm to search data from various sources, including Medicare, Medicaid, the Veteran's Health Administration and private insurers. The study produced three articles that were all peer reviewed and published Neurology.
"It was an innovative Big Data project that used information from more than 125 million health records," he said. Nick LaRocca, Vice President of Health Care Delivery and Policy Research for the Society, and co-author of the study. "We hope that the methods we used in this study can be applied to estimate the prevalence of other medical conditions."
This new issue is not a surprise for Rita Joubran, 42 from Houston, Texas who was diagnosed with multiple sclerosis in 2009. "We hope this will reinforce the sense of urgency to help find this treatment," she said. "I think we are stronger in numbers, the more I fight with my brothers and sisters, the better my chances of winning!"
At the National MS Society, we believe that the results of this study will help us achieve our goal of a world without MS.
Zagieboylo said that this would affect all areas of the Company's business. "We have to do more," she said. "We need to raise more money to fund more research; we need to fund programs and services that help people with MS live life to the full; we must ensure that the voices of people with MS are heard and that their rights to affordable, quality health care are protected. "
For more information on the MS Prevalence Study Study:
https://www.nationalmssociety.org/prevalence
SOURCE National Multiple Sclerosis Society
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