About the Registry

The National Amyotrophic Lateral Sclerosis (ALS) Registry allows persons with ALS to fight back and help defeat ALS (Lou Gehrig’s Disease). By signing up, being counted, and answering brief questions about you and your disease, you can help researchers find answers to important questions.

The National ALS Registry is a program to collect and analyze data about persons living with ALS.

  • It includes data from existing national databases and information provided by persons with ALS who choose to take part.
  • Researchers can use Registry data to look for disease pattern changes over time. They can also try to identify whether there are common risk factors among individuals with ALS.

By joining the Registry and taking the risk factor surveys, individuals living with ALS will help provide a better picture of who gets ALS and risk factors for the disease.

What are the Goals of the Registry?

The main purpose is to gather information that can be used in the fight against ALS.

The information is used to

  • estimate the number of new cases of ALS diagnosed each year,
  • estimate the number of people who have ALS at any given point in time,
  • better understand who gets ALS and what factors affect the disease, and
  • enhance research that could improve care for people with ALS.

Learn more about the National ALS Registry Video [MP4 – 30 MB]