Quantifying a Nonnotifiable Disease in the United States: The National Amyotrophic Lateral Sclerosis Registry Model

Public health surveillance is an essential tool for assessing, controlling, and preventing disease. In the United States, public health surveillance has evolved from a focus on monitoring infectious diseases to also tracking injuries, chronic diseases, birth defects, environmental and occupational exposures, and risk factors.¹ Despite this evolution of surveillance topics, many conditions still are not notifiable to federal public health officials nor are there surveillance systems in place to capture such conditions. The lack of morbidity data for nonnotifiable conditions makes it difficult to access accurately the populations at greatest risk and the true economic and societal burden of such diseases. New approaches are needed to more accurately quantify nonnotifiable conditions of interest in the United States, such as amyotrophic lateral sclerosis (ALS).