[Congressional Record Volume 155, Number 39 (Thursday, March 5, 2009)]
[Extensions of Remarks]
[Page E565]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 INTRODUCTION OF THE NATIONAL MS AND PARKINSON'S DISEASE REGISTRIES ACT

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                         HON. CHRIS VAN HOLLEN

                              of maryland

                    in the house of representatives

                        Thursday, March 5, 2009

  Mr. VAN HOLLEN. Madam Speaker, along with the co-chairs of the 
Congressional Caucuses on MS and Parkinson's disease, we are pleased to 
introduce the National MS and Parkinson's Disease Registries Act--
which, for the first time, establish national Multiple Sclerosis (MS) 
and Parkinson's disease registries at the Centers for Disease Control 
and Prevention (CDC).
  Currently, a national coordinated system to collect and analyze data 
on MS or Parkinson's disease does not exist. Accurate incidence and 
prevalence information is critical to gain a better understanding of 
these diseases that are estimated to affect more than 1.4 million 
Americans. The current lack of core knowledge about who has MS and 
Parkinson's disease and why inhibits research, programs, treatment and 
services.
  This legislation will remedy that by developing coordinated, separate 
national systems to collect and store existing MS and Parkinson's 
disease data on incidence and prevalence. These registries could help 
uncover and inform promising areas of MS and Parkinson's research such 
as genetic and environmental risk factors, and support the discovery of 
disease therapies, treatments, and one day a cure. The information 
collected through the registries will provide a foundation for 
evaluating and understanding many factors such as geographic clusters 
of diagnosis, variances in the gender ratio, disease burden, and 
changes in health care practices.
  Madam Speaker, this legislation represents an opportunity to move 
neurological disease research in a meaningful way that aims to improve 
the lives of our constituents with Parkinson's and MS. I invite my 
colleagues to join us in cosponsoring this much-needed bill.

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