National ALS Registry Releases Updated Prevalence Estimates

The Agency for Toxic Substances and Disease Registry’s (ATSDR) National ALS Registry today released its second report on the prevalence of amyotrophic lateral sclerosis (ALS, commonly known as Lou Gehrig’s disease) in the United States for the years 2012 and 2013. The report shows the Registry identified 14,713 and 15,908 people, respectively, who met the surveillance case definition of ALS. The estimated ALS prevalence rate was 4.7 cases per 100,000 U.S. population for 2012 and 5.0 cases per 100,000 for 2013.

“It is likely the increased prevalence rate since the first report was issued does not reflect an actual increase in the number of ALS cases. Rather, this increase is more attributable to better detection methods used to identify ALS cases, along with an increased public awareness of the Registry,” said Paul Mehta, M.D., medical epidemiologist and principal investigator, National ALS Registry, and lead author of the report.

ALS was more common among whites, males, and people ages 60–69 years. The age groups with the lowest number of ALS cases were people ages 18–39 years and those ≥80 years. Males had a higher prevalence rate of ALS than females overall and across all data sources. These findings remained consistent between October 2010–December 2013 and are similar to findings from long-established ALS registries in Europe and from smaller-scale epidemiologic studies previously conducted in the United States.

The Registry is the only available data source that can be used to estimate the national prevalence for ALS in the United States. Because ALS is not a nationally notifiable disease, the Registry employs an innovative use of administrative data from Medicare, Medicaid, and the Veterans Health and Benefits Administrations to determine “definite” cases from a tested algorithm. The Registry also uses a secure web portal (https://wwwn.cdc.gov/als/) to identify cases that are not included in the national administrative databases.

The Registry also works with partner organizations such as the ALS Association and Muscular Dystrophy Association to increase public awareness and educate patients and caregivers about its activities. One such activity is the research notification mechanism, which informs Registry enrollees about new clinical trials and research studies for which they might be eligible.

The Registry funds research to better understand the cause or causes of ALS; to date, ATSDR has funded 13 different research studies. This fall, the Registry will launch the National ALS Biorepository. It will store samples from home visits (e.g., blood, hair, or saliva) and postmortem collection (e.g., brain, bone, spinal cord, cerebrospinal fluid, muscle, and skin). Currently, the few existing ALS biorepositories largely have samples that are from specific clinics or medical practices or from previous clinical trials in the United States. Specimens from the National ALS Biorepository will be collected from a geographically representative sample of people with ALS who are enrolled in the Registry and can be used for research such as genetic analysis, identification of biomarkers, and exposure to environmental toxic substances.

The 16-page report “Prevalence of Amyotrophic Lateral Sclerosis – United States, 2012-2013” can be found at MMWR on Thursday, August 4, 2016, at 1:00 PM.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES