National Amyotrophic Lateral Sclerosis (ALS) Registry

Agency for Toxic Substances and Disease Registry

The Agency for Toxic Substances and Disease Registry (ATSDR), based in Atlanta, Georgia, is a federal public health agency of the U.S. Department of Health and Human Services. ATSDR serves the public by using the best science, taking responsive public health actions, and providing trusted health information to prevent harmful exposures and diseases related to toxic substances.

The National ALS Registry

The National ALS Registry is a program to collect, manage and analyze data about persons with ALS (PALS). It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among PALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials.

Selected states and metropolitan areas are also gathering data about ALS. Data from these smaller-scale registries will be used to evaluate the completeness and accuracy of the data in the National ALS Registry.

In 2008, Congress enacted the ALS Registry Act to gather and organize information about who gets ALS and the potential causes of ALS. The Agency for Toxic Substances and Disease Registry (ATSDR) is charged with developing and managing the Registry.

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