The National ALS Registry is a database that collects information from volunteers with ALS in an effort to help scientists learn more about the disease and work toward a cure.
In 2008, Congress passed the ALS Registry Act, which provided funding for the Centers for Disease Control to develop and operate the registry.
The registry gathers information that can be used to:
In 2008, Congress passed the ALS Registry Act, which provided funding for the Centers for Disease Control to develop and operate the registry.
The registry gathers information that can be used to:
- estimate the number of new cases of ALS each year
- estimate the number of people who have ALS at a specific point in time
- better 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, and
- improve care for people with ALS.
You can help make a difference by enrolling and filling out the short survey. The information you submit goes into a secure database and will only be displayed as group information. Once enrolled, you can also choose to receive information such as drug trial notifications and current research news.
National ALS Biorepository
The National ALS Biorepository is part of the National ALS Registry. In addition to filling out the survey, interested volunteers can provide blood, urine, tissue, cell, DNA, and protein samples for scientific research.
