The National ALS Registry

The National ALS Registry is the single largest ALS research project ever created.  The Registry is collecting critical information about the disease from persons living with Lou Gehrig's Disease throughout the United States in hopes of improving care for people with ALS and helping us learn what causes the disease, how it can be treated, and even prevented.

In 2008, The ALS Association and the ALS community celebrated an advocacy success when Congress charged the federal Agency for Toxic Substances and Disease Registry (ATSDR) with developing a registry to gather, organize, and maintain information about people living with ALS.  The National ALS Registry represents a groundbreaking step in the fight against ALS.  This registry will give researchers data about who has the disease and where it occurs.  They can use registry data to detect disease pattern changes over time and to investigate possible common risk factors among ALS patients. 

This information can help researchers:

  - estimate the number of new cases of ALS identified each year. 

  - estimate the number of people who have ALS at a specific point in time.

  - understand who gets ALS and what factors affect the disease. 

  - examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS improve care for people living with ALS. 

Currently, there is no accurate picture of who has ALS.  But the more people living with ALS who participate in this registry, the more accurate this picture will become.  That means we need your help. People living with ALS are able to self-enroll in the registry and provide scientists and doctors with the information they need to answer these and many other countless questions that have gone unanswered since ALS was first discovered.  

Learn more about the National ALS Registry today, and find out how this research can help, including by informing people living with ALS about new and ongoing clinical trials.  If you, or a family member, need assistance in completing the Registry, help is available.  Please contact your Regional Care Manager or Care Services team member and they will be happy to work with you.  Visit http://registry.alsa.org  for more information and participate today!

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