Maryland Congressman Chris Van Hollen and Texas Congressman Michael C. Burgess, M.D., July 20th reintroduced the bipartisan “National Neurological Diseases Surveillance System Act” (H.R.2595). A similar bill (S 425) was introduced March 1, 2011 by Colorado Senator Mark Udall and has been referred to the Senate Committee on Health, Education, Labor, and Pension.
Congressman Van Hollen reports that while thousands in the U.S. are affected by Multiple Sclerosis, Parkinson’s, and other neurological diseases and disorders, very little accurate information is available to assist researchers, physicians, and caregivers.”
The funds to establish the surveillance system would total $5,000,000 for fiscal years 2012 through 2016.
The system at CDC would ultimately help future planning of healthcare needs, detect changes in health practices, promote advocacy, and support a wide range of research initiatives,” notes Dr. Burgess.
According to Dr. Burgess, “Surveillance activities similar to this system exist for other diseases, but not for neurological diseases. A coordinated approach to data collection would allow researchers, and physicians to be able to identify at-risk populations, diagnose diseases earlier, and find common factors to lead to cures.”
The system would include data on the prevalence of neurological diseases, demographics, include information relevant to the epidemiology of the diseases, provide the natural history of the diseases, provide approaches for managing and treating diseases, and lead to developing outcomes measures.
Epidemiologists with experience in disease surveillance or registries, representatives of national voluntary health associations, health information technology experts, clinicians, and research scientists with experience in conducting translational research will be consulted. Grants, contracts, or cooperative agreements will be awarded to public or private nonprofit entities to establish the surveillance system.
The information contained in the surveillance system will be made available to NIH, FDA, CMS, AHRQ, Department of Veterans Affairs, and the Department of Defense, and not more than four years after the enactment of the legislation, a report would be submitted to Congress.
Previously, the House passed similar legislation on September 2010 but the legislation was never brought to a vote in the Senate. This bill has been referred to the House Committee on Energy and Commerce.