Each year, doctors diagnose more than 5,000 people in the United States with amyotrophic lateral sclerosis, better known as ALS. This is a life-changing diagnosis.
Still, it is difficult to estimate the total number of ALS cases in the country. No one knows what causes most cases of ALS, something the U.S. National ALS Registry is trying to change.
Therefore, the community is encouraged to learn more about registration, how their information is used, and how to register.
What is ALS?
ALS is a disease that affects the nerve cells that make muscles function in the body. This disease causes nerve cells to stop working and die.
The nerves lose the ability to activate specific muscles, causing the muscles to weaken and paralysis to occur.
In English it is known as Amyotrophic Lateral Sclerosis (ALS).
What is registration?
“The National ALS Registry is a program created by and for people living with ALS,” explained Dr. Paul Mehta, principal investigator of the Registry.
“It is intended to collect, manage and analyze data about people with ALS in the United States. It includes data and information provided by those who choose to register and complete risk factor surveys.”
What is your objective?
The main objective is to collect information that can be used in the fight against ALS (Amyotrophic Lateral Sclerosis). The information is used for the following:
– Estimate the number of new ALS cases diagnosed each year.
– Estimate the number of people who have ALS at any given time.
– Better understand who has ALS and what factors affect the disease.
– Expand research that could improve care for people with ALS.
How do researchers use the data?
Researchers can use the data to look for changes in disease patterns over time and try to identify whether there are common risk factors among people with ALS.
Since 2010, the registry has funded more than a dozen studies exploring potential risk factors for ALS.
What does participation look like?
People with ALS (Amyotrophic Lateral Sclerosis) are encouraged to share their stories, improving data on ALS and supporting research efforts.
People living with ALS can help the National ALS Registry by completing up to 18 risk factor surveys, covering topics such as occupational history and environmental exposures, helping to create a more complete picture of their ALS history.
How can someone join?
Anyone living with ALS can sign up. By joining together and taking risk factor surveys, people living with ALS have the opportunity to help future generations.
Start in cdc.gov/als/join.
