The National ALS Registry
It’s important that all people with ALS are included in the National ALS Registry. By collecting, managing and analyzing data about people with ALS, we’ll get a more accurate picture of the disease—and a better chance at fighting it. Be part of changing the future of ALS.
Because learning more about ALS is an important step in the battle to defeat it, the Agency for Toxic Substances and Disease Registry (ATSDR) has developed this registry to gather information from people who are living with ALS. This information can help doctors and scientists learn more as they work toward a cure.
National ALS Biorepository:
The National Amyotrophic Lateral Sclerosis (ALS) Biorepository is here! To take part you will need to join the National ALS Registry and agree to learn more about the Biorepository. If you have already joined the Registry you will need to log into your account and update it to get more information about the Biorepository. Visit the Biorepository webpage at www.cdc.gov/alsbiorepository to learn more.
National ALS Registry GUID:
When you enrolled in the National ALS Registry, you signed up to hear about new activities. PALS may now elect to add Globally Unique Identifiers or GUIDs to their data. This allows approved researchers to link the data from different studies without using names or other personal data. Visit the Registry website at www.cdc.gov/als to learn more.
- 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
- Provide updated links for participant resources like ALS clinical trials and
- Improve care for people with ALS
Visit the Registry website to learn more.