A National Patient Registry for ALS to Be Established


The ALS Association received a huge boost in September when Congress voted to approve the ALS Registry Act.

The ALS Association received a huge boost in September when Congress voted to approve the ALS Registry Act, legislation which would establish “the first-ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention.” Prior to this successful achievement, the ALS Association received $1 million from the CDC to start pilot programs in Georgia, Minnesota, and South Carolina “to guide the creation of a national registry.” The goals of the pilot programs were:

1) To develop and test strategies to efficiently identify ALS patients

2) To determine effective ways to obtain and share data from existing sources

The bill received tremendous bipartisan support—Harry Reid (D-NV) and John Warner (R-VA) introduced it in the Senate and Eliot Engel (D-NY) and Lee Terry (R-NE) in the House of Representatives. “The ALS Association and people with ALS across the country have been working with Congress for nearly four years to pass this critical legislation,” said Gary Leo, president and CEO of The ALS Association. “It’s long overdue… Congress has made it clear that our nation is committed to finding a treatment and cure for this horrific disease.” Senator Reid expressed his enthusiasm on the passage of the bill by saying, “This bill will arm scientists with the tools they need to make process in the search for a cure for ALS, or possibly a way to prevent this devastating disease in the first place. I am so pleased that we were able to pass this legislation."

Interestingly enough, this is one of two successful ALS initiatives that have taken place within the last couple of weeks. Last week, President Bush signed into the law the 2009 Department of Defense (DOD) Appropriations Bill, which included $5 million “to fund the ALS Research Program (ALSRP) at DOD.” Perhaps this is a sign of good things to come for the future of ALS diagnosis and treatment.

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