As of October 19, 2010 every person living with ALS in the United States can self-enroll in the National ALS R
egistry!
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 important, 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.
The ALS Association led the fight to establish the National ALS Registry, working with Congress to enact the ALS Registry Act and secure federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR).
We are now pleased to provide the ALS community with the tools and resources available on this site to help people with ALS enroll in the Registry and to assist the ALS community in sharing news about the Registry.
The National ALS Registry is a program to collect, manage, and analyze data about people with ALS. It includes data from existing national databases and information provided by patients 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 ALS patients. Additionally, the Registry provides updated links for patient resources like ALS clinical trials.
In 2008, Congress charged ATSDR with developing a registry to gather and organize information about people living with ALS. The first step was to see if creating a registry was possible. ATSDR conducted projects with several partners and tested ways for creating the registry. Insight gained from these pilot projects was useful in developing the National Registry, which launched in Fall 2010.