How Many Americans Have Multiple Sclerosis? No One Knows With Absolute Certainty

Main Category: Multiple Sclerosis
Article Date: 30 Mar 2006 - 0:00 PDT

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No one knows with absolute certainty how many people in the U.S. are diagnosed with MS every year ("incidence") or how many have MS right now ("prevalence"), although the National MS Society estimates that about 400,000 people have the disease. Steps are now being taken by a federal agency and by the National MS Society to rectify this uncertainty, including a proposal to develop a national surveillance system for MS and the launching of a National MS Society Task Force on Epidemiology. These efforts should help to bring researchers closer to identifying a possible cause of MS and should bolster programs and advocacy on behalf of people who have the disease.

Background

One reason for uncertainty concerning the number of people with MS in the U.S. is that MS is a chronic disease that is not tracked by any federal agency such as the Centers for Disease Control (CDC) or by health departments, which tend to focus on outbreaks of infectious disease such as tuberculosis. Having more precise numbers for MS would help researchers investigate possible disease clusters, provide baseline data for the study of environmental and genetic risk factors, and help agencies such as the National MS Society gear programs to specific subpopulations of people with MS.

Because there are so many different healthcare providers and insurers in the U.S., tracking a chronic disease has the potential to be a major and expensive undertaking; tens of millions of dollars are spent annually on state cancer registries. There are also concerns related to patient privacy and burdening healthcare providers with additional paper work. So finding a way to "take a snapshot" to capture all or most of the people who have MS at one time is a major undertaking and one that will need careful planning and feasibility studies.

Federal Agency Gets Involved: One hurdle in this effort was overcome last week when researchers from the Centers for Disease Control/Agency for Toxic Substances and Disease Registry (CDC/ATSDR), convened a workshop in Atlanta to discuss a proposal for setting up national surveillance systems for MS and ALS (amyotrophic lateral sclerosis). Such systems would allow for a standardized and coordinated tracking of information concerning these diseases. . National MS Society staff and some members of the Society's Epidemiology task force were participants at the workshop.

The CDC/ATSDR has funded studies in select areas of the country where possible increases of MS, or clusters, have been reported in proximity to hazardous waste sites. Researchers have found that it difficult to determine whether a true cluster exists without having solid numbers for expected incidence and prevalence of MS in specific regions. The CDC/ATSDR has never done surveillance on a chronic neurological disease, and is proposing to use MS and ALS as test cases to see whether it is feasible to track chronic diseases. MS and ALS are first in line for this effort because of all the existing work that has already been done in these areas, some of which was supported by the National MS Society.

Among the next steps outlined by workshop participants are plans to conduct, in limited geographic areas, pilot studies of methods to implement a surveillance system designed to establish incidence and prevalence. The results of these pilot studies would be used to design a national or multi-regional surveillance system for MS. Ultimately, a research disease registry could be established to address broader research questions. The Agency is now revising its plans based on feedback from workshop participants in order to move ahead with pilot testing of methods for tracking MS.

Task Force Launched: Having a legitimate counting of people who have MS is just one goal of the National MS Society's recently launched Task Force on the Epidemiology of MS. Epidemiology is the study of who gets a disease, its geographic distribution, and events that may contribute to a person's risk of getting it. The charge of the task force is to determine the feasibility of conducting a study or series of studies on a range of epidemiologic issues such as environmental risk factors, migration patterns, racial/ethnic distribution, genetics and other factors that may contribute to the risk of getting multiple sclerosis. The task force comprises experts in MS, epidemiology, health policy, and other neurological disorders. The Society is looking to this group to determine the feasibility of a national tracking system for MS, and will be collaborating closely with the ATSDR's effort as well.

Conclusions: It has been over 30 years since the federal government has seriously addressed the issue of incidence and prevalence of MS, so the interest on the part of the ATSDR in tracking MS is a welcome and major step forward. The collaboration of federal and state agencies and MS-related associations will be vital to this important effort.

For more details about ATSDR's efforts and the Society's Task Force on the Epidemiology of MS, see MS By the Numbers: New Initiatives May Provide Clues to its Cause, in Winter/Spring 2006 NMSS Research Highlights.

-- Research & Clinical Programs Department

The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS.

The Society and its network of chapters nationwide promote research, educate, advocate on critical issues, and organize a wide range of programs- including support for the newly diagnosed and those living with MS over time.

http://www.nationalmssociety.org

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