Data Collection on PD

In 2012, the Centers for Disease Control and Prevention (CDC) listed Parkinson’s disease as the 14th leading cause of death in the United States.  We estimate that 500,000 – 1.5 million Americans are living with Parkinson’s disease, but that figure is just a rough estimate.  This lack of core knowledge inhibits Parkinson’s research, treatments, programs, and services.  

PAN strongly supports the gathering of new data on the incidence and prevalence of Parkinson’s and other neurological diseases.  In the past, PAN has been supportive of the National Neurological Diseases Surveillance System Act, which would authorize the CDC to gather data on the disease using existing sources, like Medicare or Department of Veterans Affairs records.  

Legislative History

The National Neurological Diseases Surveillance System Act passed the House of Representatives in the 111th Congress; however, it failed to pass the Senate.  In the 112th Congress, the legislation was introduced in the Senate by Senator Mark Udall and in the House by Representatives Chris Van Hollen (D-MD) and Michael Burgess (R-TX).  While the legislation garnered wide bipartisan support, it did not pass during the 112th Congress.  PAN staff is meeting with community partners, Congressional champions, and PAN’s Grassroots Advisory Board about available steps for this initiative in the 113th Congress.