The prevalence of amyotrophic lateral sclerosis (ALS) seems to have gone up—from 4.7 cases per 100,000 in 2012 to 5.0 cases per 100,000 in 2013. But “seems” is the operative word, according to researchers writing in the August 5, 2016, Morbidity and Mortality Weekly Report . It is more likely that the increase is attributable to better detection methods, remarked Paul Mehta, MD, medical epidemiologist and principal investigator of the National ALS Registry and lead author of the report.
He also credits greater public awareness of the registry, which is the only available data source that can be used to estimate the prevalence of ALS in the U.S. Because ALS is not a nationally notifiable disease, the registry uses administrative data from Medicare, Medicaid, and the VHA to determine “definite” cases. It also uses a secure web portal ( https://wwwn.cdc.gov/als/) to identify cases not included in the national administrative databases.
This fall, the registry will launch the National ALS Biorepository, which will store samples (eg, blood, hair, or saliva) from home visits and postmortem collection (eg, brain, bone, spinal cord). Currently, the few existing ALS biorepositories largely rely on samples from specific clinics or medical practices or clinical trials. The specimens for National ALS Biorepository will be collected from a geographically representative sample of people with ALS. The specimens will be used for research, such as genetic analysis, identification of biomarkers, and exposure to environmental toxic substances.