Adding Up MS: Hey, What Does That Number Mean?

Two doctors looking at brain MRI

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

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Comments

  • Jeri says:

    How do we go about compiling a mandatory registry?
    Will the use of Electronic Healthcare Records eventually make big data about available that could shed light on actual numbers?
    While MS may not be contagious or considered deadly, it is still devastatingly chronic, progressive and debilitating. It impacts quality of life for so many. It seems crazy to me that we don’t have a federally mandated national registry. Researcher could do so much more with that valuable data. http://www.NARCOMS.org may be a good start, but if people aren’t aware of it, they aren’t going to self-report.

    • mweisser says:

      Thank you for the questions Jeri. You are correct that voluntary registries like http://www.NARCOMS.org or the repository and patient network from Accelerated Cure http://www.acceleratedcure.org/ are a great way to start collecting this type of information. I would suggest that anyone who is interested look into participating.

      In the United States a National Registry would need to receive congressional approval and be tracked by a regulatory body such as the CDC (Centers for Disease Control and Prevention). One thing you can you do is let your congressmen (and women) know about the importance of an MS registry; join together with other individuals with MS, MS patient organizations, and friends and family who understand this need to vocalize what a registry would mean for the MS Community.

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