The Nat’l ALS Registry: Hope for Patients, Resources for Research

Mr. Alan Alderman,  ALS patient and advocate

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

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, nearly 17,000 people in the U.S. are living with ALS.

Ed Tessaro, patient advocate for ALS

Ed Tessaro, patient advocate for ALS

Every Person’s Story Counts

Every person with ALS has an individual story, and understanding these stories will help researchers ultimately piece together clues about this disease.

Ed Tessaro was diagnosed with ALS in 2009. As he learned to cope with this diagnosis, he reflects, “I’ve never considered myself a victim of the disease because I believe in my heart all of us have a wheelchair. In my case, it’s quite literal, but with everything that goes on in my life, I realize that every family has had a crisis.”

One of the things that helps him and others with ALS is reaching out for community support and resources. “The ongoing struggle is to encourage newly diagnosed people to come in and talk about their condition. I want to help people learn about the National ALS Registry, clinical trials, and other resources that can provide support and hope.”

Research Relies on the National ALS Registry

Researchers from all around the world can access the Registry data to help scientists learn more about what causes this disease. It is important to include as many people as possible living with the disease in the U.S. to get the most accurate information.

All Registry information is private and can only be viewed by Registry-approved scientists. Anyone who registers is not identified by name. When patients join, it helps give researchers more information. This could lead to a better understanding of the causes of ALS and could help offer a better future for people with ALS in all communities.

Dr. Eva Feldman, ALS Researcher

Dr. Eva Feldman, ALS Researcher

Eva Feldman, MD, PhD, states that: “The National ALS Registry is crucial for our research to help identify potential environmental risk factors associated with ALS.”

Dr. Feldman is doing research at the University of Michigan that will help identify risk factors from ALS patients’ environments (where they worked or lived) that might show whether patients were potentially exposed to different toxins, and then comparing some of their risk factors to similar people who do not have ALS.

Studying and identifying these risk factors over time could help improve our understanding of what could cause ALS, and even find new biomarkers (measures of possible disease or conditions in the body) to aid diagnosis.

The National ALS Registry is committed to helping advance research. The Registry funds a wide range of research in order to better understand what may cause ALS. Read more about Registry research.

If you or someone you care about has ALS, please consider learning more about the National ALS Registry by visiting the website.

This short video shares the personal stories of ALS patients and their families, and why the ATSDR ALS Registry is important.

Page last reviewed: October 15, 2019