National ALS Registry Aims to Find AnswersPosted on by
What do a Major League Baseball hall of fame player from the 1920s and 1930s, a former Baltimore Ravens football player, and about 5,600 persons annually in the United States have in common? All were diagnosed with Amyotrophic Lateral Sclerosis (ALS).
ALS claimed the life of former New York Yankees first baseman Lou Gehrig in 1941. O.J. Brigance, a former Raven’s linebacker who was diagnosed with the debilitating disease in 2007, now raises awareness for ALS and money to help families pay for medical expenses.
Brigance and other ALS awareness advocates will not be alone this month in spreading the word about ALS, because May is ALS Awareness Month.
On average, persons with the disease die within two to five years after being diagnosed with ALS, which is commonly called Lou Gehrig’s disease. But the disease affects everyone differently, and some people live longer.
The National ALS Registry
The ALS Registry Act that was passed by Congress in 2008 charged ATSDR with creating a national ALS registry that will contain extensive ALS patient data and patient resources. Launched in October, 2010, the National ALS Registry helps persons with ALS and researchers learn more about the disease.
“We still don’t have a clear understanding of what causes ALS,” says Dr. Kevin Horton, ATSDR’s ALS program administrator.
Understanding more about the disease could lead to researchers discovering a cause, which could then lead to a cure. Researchers will use the National ALS Registry to analyze the data on persons with the disease. They hope to find common links.
“Is there a common thread?” Horton asks. “Maybe there is among people who have the disease. And the Registry is a critical tool that will help us learn more.”
The National ALS Registry’s data come from two sources: existing national health databases and persons who have the disease. The information from the national health databases comes from Medicare, Medicaid, and the Veterans Administration.
The patient information is self-provided. Persons with ALS can access www.cdc.gov/als to answer a brief series of questions about their medical history, family’s medical history, and employment.
A Note about the ALS Registry
The National ALS Registry was launched in 2010 through the U.S. Congress’ amendment of the Public Health Service Act. It underwent a three year pilot project phase in which creators established its building blocks. Data is still being gathered for the ALS Registry.
All of the data provided through the National ALS Registry is secure. ATSDR’s goal is for the Registry to be used to:
- estimate the number of new cases of ALS each year;
- estimate the number of people who have ALS at a specific point in time;
- better understand who gets ALS and what factors affect the disease;
- examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and
- improve care for people with ALS.
For More Information
Visit http://www.alsa.org/community/services.html?service_type=chapters for ALS Awareness Month events in your area.