Stepping Up the Fight Against ALS (Rep. Eliot Engel)

ALS, also known as Lou Gehrig’s Disease, is a fatal, progressive neurodegenerative disease.  Approximately 5,600 people in the U.S. are diagnosed with it every year, and it is estimated that as many as 30,000 Americans have the disease at any given time.  The average life expectancy for someone with ALS is 2 to 5 years from the time of diagnosis.  There is no known cure.

Establishing a single national patient registry to collect and store information on ALS will help identify the incidence and prevalence of ALS as well as other motor neuron disorders in the United States. This urgently needed data will be used for ALS research, disease management and the development of standards of care to significantly enhance our efforts to find a treatment and cure for ALS.

The ALS Registry Act would provide for the creation and maintenance of a single nationwide ALS Registry at the Centers for Disease Control and Prevention (CDC).  The registry would collect key data and information as determined by a newly created federal Advisory Committee on the National ALS Registry. It would also build on a FY06 Congressional appropriation directing the CDC to evaluate the science to guide the creation of a national ALS Registry. The bill authorizes $25 million for FY 2008 and such sums as necessary for fiscal years 2009 through 2010.