Bill introduced to create national patient registry for ALS cure

WASHINGTON — A bill to create a national patient registry to collect data in the search of cures for Lou Gehrig’s Disease was introduced this week in the U.S. Senate.

Researchers face only a patchwork of information about patients and the circumstances of their battles against Amyotrophic Lateral Sclerosis, or ALS, said bill sponsor Sen. Harry Reid, D-Nev.

“Perhaps the most obvious example of the limitations of current surveillance systems and registries is that we do not know with certainty how many people are living with ALS in the United States today,” Reid said in a Senate speech that marked the bill introduction on Monday.

“Over 136 years after the discovery of ALS, estimates on its prevalence still vary by as much as 100 percent — from a low of about 15,000 patients to as many as 30,000,” Reid said.

The registry would be established at the Centers for Disease Control to collect data concerning the prevalence of the disease, the environmental and work factors that may contribute to it, and patient histories.

Congress has approved $1.8 million in funding over the past two years for the Centers for Disease Control to set up pilot registries, Reid said.