Sept. 23, 2008
Senate Passes ALS Registry Act
Today, the ALS community celebrated the Senate's passage of S. 1382, the ALS Registry Act, with very positive ramifications for people with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). The House of Representatives passed similar legislation in 2007.
The Act amends the Public Health Service Act to require the Secretary of Health and Human Services to develop a system that will gather data on ALS and store it in a national registry. The federal Centers for Disease Control (CDC) will be responsible for creating the registry and coordinating research with other federal agencies.
More than 5,000 Americans are newly affected by ALS every year. Benefits of the registry to them are that data assimilated in the central repository may help determine ALS risk factors (including those associated with environments and occupations), as well as which therapies may be beneficial. Data will also include details such as participants' age, ethnicity and family history of ALS.
"This is a landmark day for people living with ALS," said Augie Nieto, co-chairman of MDA's ALS Division. "Today, the federal government joined with our community in a collaborative effort to consolidate information about ALS that will expedite our quest for a cure." In 2005, Nieto learned he had ALS. Now largely paralyzed, he relies on a host of breathing, mobility and communications devices.
The registry is the latest of several now in existence, including one funded by MDA called the ALS Connection (on the Web at www.alsconnection.com). This registry seeks data for people obtaining ALS care anywhere in North America. MDA has funded more than $230 million in ALS research and services since its ALS programs began.
"Registries are very helpful in identifying trends that should be followed up in research studies," said Valerie Cwik, MDA medical director and senior vice president of research. "We're hopeful that investing in a national ALS database will result in enhanced efforts to define treatments."
Now the bill returns to the House for a procedural vote before moving on to the president's desk for final signature. |
