ALS Registry
Every person living with ALS in the United States can enroll in the National ALS Registry! The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States.
Most importantly, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.
To learn more about the National ALS Registry or to join, visit the CDC website.
Obtenga más información sobre el Registro Nacional de ELA en español aquí.
California Neurodegenerative Disease Registry
The California Neurodegenerative Disease Registry is the state's surveillance system for neurodegenerative diseases. In 2021, California enacted Health and Safety Code (HSC) 103871, requiring the California Department of Public Health (CDPH) to collect data on neurodegenerative diseases beyond Parkinson’s disease, which it began tracking in 2018.
One of the amendments to HSC 103871 made by Assembly Bill 424 (2023) was adding the following words, “…include, but not be limited to, amyotrophic lateral sclerosis also known as Lou Gehrig’s disease” in section (b). The data will help determine the incidence and prevalence of neurodegenerative diseases including ALS. The CDPH director has the authority to decide which additional diseases to track and when to begin collection. The law also mandates that hospitals, facilities, physicians, and healthcare providers report cases to the CDPH.
ALS will officially be added to the CA registry in 2026. For more information about the California Neurodegenerative Disease Registry, visit the CDPH’s website.