Friday, July 22, 2011

Surveillance Act Introduced

On Wednesday, July 20, 2011, the National Neurological Diseases Surveillance System Act (H.R. 2595) was introduced. Last Congress, it was introduced and known as the MS and Parkinson’s Disease Registries bill, but the legislation was broadened before it was passed by the House of Representatives to include all neurological diseases. If enacted, this legislation will bring us yet another step closer to a world free of MS. This bill would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) that will track and collect data about neurological diseases, including MS. 

Currently, no accurate estimates are available to help us better understand the complexities and intricacies of the MS population.
As a person living with MS, I was shocked to learn that the last national study of incidence and prevalence of MS was conducted 36 years ago - in 1975! Can you imagine trying to formulate an accurate hypothesis and conduct scientific studies with data almost four decades old? H.R. 2595 would fix this problem by aggregating all existing de-identified information in one central location for neurological diseases, and thus it will eliminate road blocks for researchers due to the lack of knowledge that inhibits their work.
Over the past forty years, technology like the MRI and other innovative tools have developed that allow doctors to diagnose MS better than ever before. With these advancements has come an increase in detection of MS yet we still don’t know answers to fairly simple questions like— how many people are currently living with MS in the US? Where do people with MS live? What ratio of people living with MS are women versus men? By structuring a centralized system to track important data, H.R. 2595 would enlighten researchers by answering these fundamental questions, helping them solve the puzzle of MS and discover better treatments and one day, a cure. With this increased knowledge both private and public research entities, like the National MS Society, the National Institutes of Health (NIH), and the Congressionally Directed Medical Research Program (CDMRP) can more precisely focus research efforts and ensure that limited research dollars are being maximized.

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!


Anonymous said...

I think National Neurological Diseases Surveillance System Act (H.R. 2595) is a good idea. However, before I could fully support this I would want to know that everything is being done to provide patients with an accurate diagnosis. I have read that between 20 and 40% of all MS cases are not correct diagnosis'. And I know personally somewhere in the neighborhood of 25 who have been wrongly diagnosed and have actually had CADASIL.Although CADASIL is also a neurological disorder ( which mimics MS) medication taken by these patients for MS can be detrimental. Unless all is done to get accurate diagnosis all data collected is virtually useless.

Anonymous said...

I fully support this Act and believe it is way past time that a registry be done for persons with MS. I believe that MS is becoming more and more an epidemic. I have found more people who are not diagnosed with MS who actually have MS than the other way around. So many people have it and are waiting for a diagnosis because their neurologist cannot seem to get a handle on their symptoms. But they know that they have it and want to be on one of the MS therapy drugs. We need this registry now! I support this!