House Bills - 109th Congress

H.R. 4033—The ALS Registry Act

On October 7, 2005, Representative Eliot Engel (D-NY) introduced H.R. 4033, the ALS Registry Act. The bill would amend the PHS Act to require the CDC to develop a system to collect data and establish a national registry of cases of ALS in the United States. CDC would also be required to establish an advisory committee for the registry which would include, among other Federal agencies and voluntary associations, the Director, NIH, and representatives from NINDS and NIEHS. The Secretary of HHS would be required to ensure that epidemiological and other data collected for the registry be made available to NIH and the Department of Veteran Affairs. H.R. 4033 has 46 cosponsors and was referred to the House Committee on Energy and Commerce.