Incidence Studies and the Need for MS Patient Registries

Several studies regarding incidence and prevalence rates of multiple sclerosis in various areas of the world have been released in recent weeks.  Earlier this week was the announcement of the 2013 Atlas of MS study conducted by Multiple Sclerosis International Federation (MSIF) which revealed that estimates of MS cases worldwide have risen 9.5% between 2008 and 2013 and that approximately 2.3 million people are living with MS around the world.

Last week, the University of Dundee announced results of a study covering the years 1990-2010 which estimated that 126,669 people were living with MS in the United Kingdom (UK) in 2010 (203.4 per 100,000 population), which is a 27% increase from previous estimates.  However, incidence rates (the number of persons diagnosed each year) have decreased with 6003 new cases diagnosed in 2010 in the UK (9.64 per 100,000/year).   Researchers suggest that the rising prevalence is likely due to decreased mortality rates with patients living longer (Mackenzie, 2013).

Researchers in Canada released results from a meta-analysis of prevalence and incidence studies of MS in Europe last week.  Researchers identified 123 studies published between January 1985 and January 2011 which met their inclusion criteria, however only 37% of the studies provided standardized estimates which can hinder study-to-study comparisons.  Estimates tended to be higher in the more recent studies and were higher in the Nordic countries and in northern regions of the British Isles. However, there were marked geographical disparities in available data, with large areas of Europe unrepresented and other regions well-represented in the literature (Kingwell, 2013).

For the 2013 Atlas of MS study, the prevalence of MS in the United States (US) is estimated at 400,000 persons living with the disease, information provided by the National MS Society.  However, there has not been a comprehensive study of MS incidence and prevalence in the US since 1975 and the current estimate is an extrapolation based on that survey.

Some countries have established patient registries, such as the Danish MS Registry or the Italian MS Database Network, that are extremely helpful for studying disease characteristics in large populations and monitoring the long-term outcome of disease-modifying therapies (Flachenecker, 2008).  A 2008 review of national patient registries focused on six large-scale registries which “monitor the health care situation of MS patients over time including the implementation of guidelines relating to care and treatment, measure the improvements that have taken place, and reveal shortages and/or misalignment in health care services.”

Additional patients registries have been established since the 2008 review, such as the Scottish MS Register (SMSR) which was established to collect information about people diagnosed with MS since January 1, 2010.  General neurologists and MS clinical teams provided the data regarding newly diagnosed patients upon which the annual SMSR National Report (most recent published on September 10, 2013) is based.  With a systematic program in place for collecting information regarding newly diagnosed patients, incidence rates and epidemiological data are more accurately documented.

Some MS registries are run by government health systems and others are powered by volunteer patient participation.  For example, the newly established UK MS Register is actively recruiting participants on their website and in select clinical centers in the UK.  In the US, the North American Committee on Multiple Sclerosis (NARCOMS), a nonprofit established in 1993 by the Consortium of MS Centers (CMSC), established a volunteer patient registry to which more than 36,000 people have chosen to provide MS-related health updates to the database every 6 months.

Patient registries such as the one sponsored by NARCOMS are important for measuring several aspects of MS epidemiology, disease characteristics, and treatment trends.  However, a national database that collated more robust information, and represented more than 10% of Americans living with MS, could significantly improve our understanding of the disease.  Information collected through a national registry would allow for future planning of health care needs, detect changes in health practices, assess disease burden, promote advocacy and support a wide range of research initiatives.  Organizations and government agencies could also rely on the resulting data to help them provide better targeted services to people with MS.

The National MS Society and the Parkinson’s Action Network have repeatedly turned to Congress to establish permanent national MS and Parkinson’s diseases registries through legislation.  However, during each of the 110th, 111th, and 112th Congresses between the years 2008 to 2011, three separate proposed bills have died in committee or failed to pass both the House and Senate.  As is evidenced by US Congress’ recent failure to pass legislation to fund the government and the resulting shutdown of the government this week, sometimes it is very difficult to get everyone to agree.

Based on the 2013 Atlas of MS study, the prevalence of MS has increased worldwide while the incidence of MS may be increasing in certain regions or, in fact, may be decreasing as is seen in the UK study (Mackenzie, 2013).  Unfortunately without a current and effective MS database in the US, we cannot say with certainty what is happening in our own country.  Perhaps one day we will have the resources to discern accurately how the face of MS is changing here at home.

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