Wednesday, July 7, 2010

Importance of MS Registry

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Though it is estimated that 400,000 people have MS in the United States, it is difficult to obtain an accurate number regarding the incidence of this disease because there is currently no national database for MS data collection. Not only does this make characterizing the overall prevalence of the disease difficult, it has also made advancing research challenging for epidemiologists. Treatments and cures for diseases such as MS often begin with accurate statistical information provided by the Toxic Substances and Disease Registry, yet this information remains unavailable for MS.

HR 1362/S1273, the National MS and Parkinson’s Disease Registry Act, would allow Multiple Sclerosis and Parkinson’s Disease to be registered separately by the Agency for Toxic Substances and Disease Registry. This would produce accurate numbers about the incidence and prevalence of the MS—information that is needed to effectively further study the disease. It has been more than 3 decades since the last national study was conducted regarding the prevalence of MS. The lack of information has inhibited the development of research, programs and services.

Though there are several small MS registries throughout the United States, they do not provide the accurate, coordinated information necessary to facilitate national review of the disease. A national MS Registry conducted through the Agency for Toxic Substances and Disease Registry would serve as a vital source of information not only for epidemiologists, but also for medical providers, researchers, and the general MS community. The registry would provide geographical information about the prevalence of MS, as well as differences in health care burden of the disease.

Ask US Senators Burr and Hagan and your US Representative to support the National MS and Parkinson's Disease Registry Act so that MS research can be furthered. For more information, click here.
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