Washington, DC – Today, Maryland Congressman Chris Van Hollen (D-MD) and Congressman Michael C. Burgess, M.D. (R-TX) introduced the bipartisan National Neurological Diseases Surveillance System Act. While thousands of Americans are affected by Multiple Sclerosis, Parkinson’s, and other neurological diseases, very little accurate information exists to assist those who research, treat, and provide care to those suffering from these diseases – this bill would help change that. The House passed the legislation on September 28, 2010, but the legislation was not brought to a vote in the Senate.

“The bipartisan National Neurological Diseases Surveillance System Act will establish a system at the CDC that will ultimately provide more accurate information and assist those who research, treat, and provide care to those suffering from neurological diseases, including Multiple Sclerosis and Parkinson’s disease,” said Congressman Van Hollen. “I am proud to have worked with Congressman Burgess on this important legislation, which will provide a foundation for evaluating and understanding the occurrence of these diseases, improve treatment, and hopefully lead to cures.”

“As Co-Chair of the Congressional MS Caucus, I firmly believe a national surveillance system would allow for future planning of health care needs, detect changes in health practices, promote advocacy, and support a wide range of research initiatives,” Dr. Burgess said.  “Surveillance activities similar to this exist for other diseases, but currently not for neurological diseases.  A coordinated approach to data collection would allow researchers, and physicians to be able to identify at-risk populations, diagnose earlier, and ultimately, find common factors that will lead to cures.”
Parkinson’s Action Network CEO Amy Comstock Rick said, "Right now, we can only cite estimated numbers when talking about Parkinson's cases because the frustrating truth is that we actually don’t know how many people are living with Parkinson’s disease in America.  This important legislation sets us on a course to learn who is affected by this terrible disease and where there are geographic clusters, which ultimately will enable scientists to better understand the causes of MS and Parkinson’s disease and help move us toward better treatments and a cure."

Joyce Nelson, President and CEO of the National Multiple Sclerosis Society, stated, “Currently, both public and private entities are allocating considerable resources to find treatments and ultimately, a cure for MS; however, the researchers are constrained because they don’t have access to the most fundamental data about the disease. With more accurate data about the characteristics and number of people living with MS, both the government and privately-funded researchers will be able to tailor their research more effectively and use their resources most efficiently.  This legislation will also allow us to learn more directly who is affected by this terrible disease and where there are geographic clusters.”

To read the full text of the legislation, click here.

 ###