Announcing National MS And Parkinson's Disease Registries Act

Main Category: Parkinson's Disease
Also Included In: Multiple Sclerosis
Article Date: 19 Jun 2009 - 4:00 PDT

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Senator Byron Dorgan (ND) on Tuesday introduced legislation that would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis and Parkinson's disease. Accurate incidence and prevalence information on these two diseases currently does not exist. Click here to ask your Senator to support this legislation.

The National MS and Parkinson's Disease Registries Act would establish separate registries for MS and Parkinson's disease at the Agency for Toxic Substances and Disease Registry at the Centers for Disease Control and Prevention (CDC).

The National Multiple Sclerosis Society has worked closely with the Parkinson's Action Network to introduce legislation in both chambers of Congress to address the lack of accurate incidence information that both communities face. Both organizations will be advocating to advance this legislation and have it signed into law in the 111th Congress.

"I often receive letters from people living with MS who are concerned about whether the current numbers accurately reflect the MS community," National MS Society President and CEO Joyce Nelson said. "A national multiple sclerosis registry will give us a clearer picture of the impact of MS and help us better serve all those who live with this disease."

Lack of core information and knowledge about who has MS and Parkinson's disease inhibits progress in biomedical research, the development of new and better treatments, and the creation of programs and services to help people live independent and productive lives while fighting these diseases.

These registries will authorize the CDC to develop national coordinated systems to collect and analyze existing MS and Parkinson's disease data. The epidemiological data collected and analyzed through the registries will provide a foundation for better evaluating and understanding issues such as geographic clusters of diagnosis, genetic and environmental risk factors, variances in gender ratio, disease burden, and changes in health care practices. This important legislation also sets the ground work for developing epidemiological registries for other neurological diseases and disorders.

Source
National MS Society

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