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What is the National ALS Registry?
The National ALS Registry is a program to collect, manage and analyze data about persons with ALS (persons living with ALS). 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 persons living with ALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials. Persons living with ALS can add their information to the Registry by clicking the button at the top left of this page.
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.