The viral Ice Bucket Challenge and the first effort to estimate the prevalence of amyotrophic lateral sclerosis have raised awareness of the neurodegenerative disease.
Mere days before the Ice Bucket Challenge quite literally began soaking the nation, the Agency for Toxic Substances and Disease Registry (ATSDR) reported the results of the first and only effort to estimate the prevalence of amyotrophic lateral sclerosis (ALS) in the United States.
For their research
published July 24, 2014, in the Morbidity and Mortality Weekly Report from the US Centers for Disease Control and Prevention, ATSDR investigators collected and reviewed information from the National ALS Registry, which used a 2-pronged approach in the form of an online self-report portal and 4 existing national administrative databases maintained by Medicare, Medicaid, the Veterans Health Administration, and the Veterans Benefits Administration in order to identify the prevalence of ALS, commonly known as Lou Gehrig’s disease.
Using these methods, the researchers identified a total of 12,187 ALS patients between October 19, 2010, and December 31, 2011, estimating a prevalence of 4 ALS cases per 100,000 persons in the general US population. In addition, they found ALS was more common among white males, non-Hispanics, and those aged 60 to 69 years.
The ATSDR report also included preliminary data on possible ALS risk factors, including military service, smoking status, alcohol consumption, and previous exposure to heavy metals, though the authors noted “most risk-factor studies have had small sample sizes or have been conducted in limited geographic areas in populations that might not be representative of the US population.”
“This initial report is an important milestone for the National ALS Registry and adds to our knowledge of the disease, but this is just the beginning,” said Barbara Newhouse, president and CEO of the ALS Association, in a press release
. “The first step in what is a long-term research project that not only can tell us how many people have ALS but, more importantly, why they have it. Further enrollment of people living with ALS is critical.”
Since the ALS Association launched the Ice Bucket Challenge on July 29, 2014, it has received $22.9 million in donations
, mostly resulting from countless videos
of participants dumping buckets of ice on their heads to help raise awareness of the neurodegenerative