About the Registry

For Persons with ALS

The diagnosis of ALS is a life-changing event for you and your family. This can be an emotional time for everyone involved. For many patients, taking part in the National ALS Registry is a way to contribute to the fight against this disease.

The National ALS Registry was created by Congress to help find out who gets ALS, how many people in the United States have ALS, and most importantly, to find out what are the risk factors for ALS. Since launching in October 2010, the Registry has allowed patients to take part and help researchers try to answer these questions. The information that is gathered from persons with ALS will allow researchers to make progress in the fight against ALS.

ALS Research Counts on You

Persons with ALS can join the Registry safely and securely. There is no cost to join, and it is completely voluntary. Persons with ALS who join can:

• Take risk factor surveys that may ask about where they worked, lived, sports they played, military and job history, as well as other questions.
• Learn how they can donate their blood and saliva to the National ALS Biorepository to help researchers in the study of biomarkers, genetics of ALS, how the disease progresses, and potential treatments
• Choose to receive emails about clinical trials and epidemiological studies. Watch the videomedia icon that explains more about the Registry.

Organizations that Offer Support and Help

Persons with ALS and their caregivers do not need to fight this battle alone. Help is available from the following national and local organizations. (Note, the CDC/ATSDR does not endorse the content on the respective websites).

• ALS Associationexternal icon: largest ALS organization in the United States serves persons with ALS and supports caregivers.
• Muscular Dystrophy Associationexternal icon: organization that also serves persons with ALS and their caregivers.
• Les Turner ALS Foundationexternal icon: organization that servers persons with ALS and their caregivers in the Chicagoland area.
• ALS Untangledexternal icon: provides information to persons with ALS about treatments and helps to identify misinformation.

Resources for Veterans

Veterans are twice as likely to develop ALS as those who have not served. There are benefits available for veterans that are not available for civilians. To learn more about these benefits, click hereexternal icon.

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.

Why Should I Join the Registry?

It is important to include as many people living with the disease as possible to get the most accurate information.

When you join, you help give researchers more information. This could lead to a better understanding of the risk factors for ALS, and could help offer a better future for persons with ALS.

Resources Available through the Registry

The Registry has many parts that allow persons living with ALS to help advance research. This includes:

• Choosing to receive emails about clinical trials and epidemiological studies, and
• Donating blood, saliva, and urine to the National ALS Biorepository
  • A biorepository is a facility that collects and stores samples of biological material. This could include blood, urine, tissue, cells, DNA, and proteins. Some medical information may also be stored along with a written consent form.

Additional resources available through the Registry include

• ALS clinics and support group information,
• Fact sheets about ALS and the Registry , and
• Reports and journal articles.

Learn More about Signing Up

Any U.S. citizen or legal resident with ALS who is at least 18 years of age can sign up for the Registry. All that you need is a computer, an internet connection, and an email address. If you need help, caregivers or others can assist in person or over the phone.

All Registry information is private. It can only be viewed by Registry approved scientists. Anyone who registers is not identified by name.

What kind of information is collected?

The National ALS Registry collects basic information such as your age and sex. The surveys collect data on occupational and environmental risk factors, such as military history, work history, physical activity, and family history.