The National ALS Registry

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.

Darrian Altman

Darrian Altman

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.

Darrian Altman was diagnosed with ALS in 2009. Before his diagnosis, Darrian worked as a Spanish Court Interpreter and received a Master’s Degree in Spanish Linguistics.

Within a year after his ALS diagnosis, Darrian was having difficulties with his speech and began searching for an app to help him communicate. Unfortunately, a majority of the apps available were not only ineffective, but pricey. Not being able to work, living on a fixed income and struggling to find an economic solution to assist with communication, Darrian began his quest in creating a full-featured, free, Text-to-Speech app for not only himself, but everyone else in a similar situation.

With zero programming experience, Darrian registered for several free online courses, and he is now on the tenth version of the app.

Darrian says, “One of the worst things about ALS is losing independence. I have used the app on my iPad and my phone and have made all kinds of phone calls to companies and banks. It allows me to do a lot of things on my own.”

More Than Counting Cases

Do you know what Brainstorm Cell Therapeutics, Cytokinetics, Orphazyme, Amylyx Pharmaceuticals, and Massachusetts General Hospital have in common? They have all used the National ALS Registry’s notification tool to help recruit for their respective clinical trials. These trials are looking to halt, reverse, and possibly cure ALS.

The National ALS Registry has helped recruit thousands of patients for clinical trials and epidemiological studies.

Click here to learn more about the new research studies.

Dr. Eva Feldman, ALS Researcher

Dr. Eva Feldman, ALS Researcher

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.

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 13, 2020