Congress votes to set up registry for ALS sufferers
By Burton Bollag
Friday, October 03, 2008
Congress has voted to establish the first-ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis (ALS), to be administered by the Centers for Disease Control and Prevention.
The aim is to use the collected data to help discover the cause, and develop treatments and a cure for the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941.
“This bill will arm scientists with the tools they need to make progress in the search for a cure for ALS, or possibly a way to prevent this devastating disease in the first place," said Senate Majority Leader Harry Reid (D-Nev.).
“It’s long overdue," said Gary Leo, president of the ALS Association.
In 2005, the association got Congress to direct nearly $1 million of existing CDC funds to begin three pilot projects to to guide the creation of a national registry. Those projects, in Georgia, Minnesota and South Carolina, have two goals: to develop and test strategies to efficiently identify ALS patients; and to determine effective ways to obtain and share data from existing sources, such as ALS Association chapters and the Veterans Affairs Department's ALS Registry.
In the South Carolina program, for example, the Office of Research and Statistics of the South Carolina Budget and Control Board has been collecting data from more than 40 public and private statewide partnerships. Individuals with ALS are identified using International Classification of Diseases codes. If available, specific procedures and prescription medication data are used to select potential ALS patients who were not identified using the codes. Once individuals are identified, medical records are reviewed to confirm that the diagnosis coding was correct.
