The ALS Registry: Hope for Patients, Resources for Research

"The National ALS Registry provides hope for patients and data for researchers. Learn more.

Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. It first gained national attention as Lou Gehrig’s disease, named after the famous baseball player who was diagnosed with ALS in 1939. To date, the causes of ALS are unknown, and there is still no known cure. The disease strikes quickly, usually leading to death within 2–5 years of diagnosis.

The National ALS Registry helps gather confidential information from those who are living with this disease. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes. According to the most recent estimates from the National Registry, about 16,000 people in the U.S. are living with ALS.."
ALS

National ALS Registry

"While the Ice Bucket Challenge has brought a tremendous amount of general awareness, , we still know little about the disease, including its cause(s), why ALS strikes some people and not others, and how to stop it. The federal Agency for Toxic Substances and Disease Registry (ATSDR) is working to learn more about the disease through its National ALS Registry. The goals of the Registry are to better describe the incidence and prevalence of ALS in the U.S., learn more about the possible environmental and occupational exposures that may increase someone’s risk of having the disease, and characterize the demographics—age, sex, race, and ethnicity—of people living with the disease..."
 ALS registry