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This week, Congress approved the ALS Registry Act, creating a nationwide database to promote better understanding of this debilitating disease. Sen. John Warner was a lead Republican co-sponsor of the legislation.
Passed unanimously by the Senate on Sept. 23, 2008, and by the House on Sept. 26, 2008, the legislation, S. 1382, establishes a single, national patient registry to collect and store information on the prevalence and incidence of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Such information is vital for ALS research and management, and promotes better understanding of the disease, enhancing efforts to find a treatment and cure.
The registry will be managed by the Centers for Disease Control and Prevention, and will build upon various pre-existing registries and pilot programs that were established in 2006.
The legislation, first introduced in 2005, also establishes a Federal Advisory Committee on the National ALS Registry, and ensures that data in the registry is made available to the National Institutes of Health and the Department of Veterans Affairs.
“After years of hard work, I am pleased Congress has passed the ALS Registry Act, which provides for the creation and maintenance of a single nationwide ALS registry,” said Warner. “With an estimated 30,000 Americans affected by this disease at any given time and some 15 new cases of ALS diagnosed every day, this much-needed legislation will help provide hope for those affected and their families.”