7/9/2018
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`MS Prevalence : National Multiple Sclerosis Society
`
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`Multiple Sclerosis
`Socsety
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`MS Prevalence
`
`Worldwide prevalence
`
`Worldwide, MS organizations have estimated that 2.3 million individuals are living with MS.
`
`Improving reporting
`
`You can help improve the accuracy of MS prevalence reporting by joining the Society in our collective
`efforts to advocate for the establishment of a national registry that would track MS prevalence in the US
`by joining the Society’s activist network.
`
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`
`MS prevalence
`
`> Worldwide Prevalence: MS organizations have estimated that 2.3 million people are living with MS
`
`worldwide. However, in the U.S., there has not been a scientifically sound, national study of prevalence since
`
`1975. Additionally, MS incidence and prevalence are not consistently reported or tracked in the U.S., and there is
`
`no government requirement to do so. In the absence of government-reported data, the National MS Society
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`relies on scientifically-sound estimates of prevalence while we advocate for better and more systematic reporting
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`and tracking at a nationwide level.
`
`National MS Society study to develop a new prevalence estimate
`
`> To address the gap in prevalence estimates the Society launched the MS Prevalence Initiative with the goal of
`
`determining the best way to develop a scientifically sound and economically feasible estimate of the number of
`
`people in the US. who have MS. This initiative included leading experts in MS prevalence, who utilized
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`administrative datasets from a variety of sources including Medicare, Medicaid, Veteran’s Health Administration,
`
`and private insurers. This scientifically rigorous approach was necessary to ensure an accurate prevalence
`estimate.
`
`> The Society’s progress in updating the estimate of multiple sclerosis prevalence in the US. is vital to the MS
`
`movement — both here and globally. Our increased understanding of the impact of M8 on people’s lives,
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`including the individual and collective financial impact of managing MS, along with the healthcare and services
`
`people with MS need, is essential. A scientifically sound prevalence estimate will help researchers understand if
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`MS is increasing, or if there are MS clusters that may hold clues to factors that may trigger MS. Additionally, it will
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`ensure the continued acceleration of crucial research to ultimately find treatments and solutions for each person
`
`living with MS.
`
`> Preliminary results of the study estimate that nearly 1 million people are living with MS in the U.S., which is more
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`than twice the previously reported number. The results were presented in October 2017 at ECTRIMS — the
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`world’s largest MS research meeting.
`
`> An important next step in confirming this prevalence number includes anticipated publication in a prominent
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`medical journal. Publication is expected in 2018, The final results will be broadly communicated as another
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`important tool in accelerating progress toward achieving a world free of MS.
`
`https://www.nationalmssociety.org/About-the-Society/MS-Prevalence
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`1/2
`
`Sawai (IPR2019-00789), EX. 1042, p. 001
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`Sawai (IPR2019-00789), Ex. 1042, p. 001
`
`

`

`7/9/2018
`
`MS Prevalence : National Multiple Sclerosis Society
`
`Other related National MS Society work
`
`> A National Neurological Conditions Surveillance System through the Centers for Disease Control and Prevention
`
`(CDC) was authorized through the 21St Century Cures Act.
`
`> The Society, and MS advocates nationwide, advocated for the inclusion of the System in the 21StCentury Cures
`Act to track and collect data on the epidemiology of neurological conditions. It is authorized for $5 million a year
`from 2018-2022.
`
`> Now that the System is authorized, MS activists and others with neurological conditions must advocate for
`
`funding for the CDC to create and manage the System.
`
`> Learn more about this issue.
`
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`> To ensure that the voices of people with MS are heard, and that to advocate for funding for the System and for
`
`other issues important to people with MS, please join the Society’s activist network.
`
`Definitions
`
`> Prevalence = the number of people living with a diagnosis of MS within a given period of time.
`
`> Incidence = the number of people NEWLY diagnosed with MS within a given period of time.
`
`https ://www. nationalmssociety.org/About—th e-Society/MS-Prevalence
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`
`Sawai (IPR2019-00789), EX. 1042, p. 002
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`2/2
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`
`
`Sawai (IPR2019-00789), Ex. 1042, p. 002
`
`