First Anniversary of National ALS Registry

ATSDR celebrates the first year of the National ALS Registry. The goal of the registry is to help scientists learn more about ALS. Help us defeat ALS!

On October 19, 2011, the National Amyotrophic Lateral Sclerosis (ALS) Registry celebrates its first anniversary. What a year it has been! The Registry continues to grow and now includes registrants from all 50 states. Also, the Registry is adding several new features.

It is believed that doctors diagnose about 5000 persons with ALS (PALS) each year, but no one knows exactly how many people in the United States have the disease. In 2008, Congress enacted the ALS Registry Act, which charges the Agency for Toxic Substances and Disease Registry (ATSDR) with creating and maintaining the Registry.

No one knows what causes ALS, and science has yet to find a cure for the disease. Researchers do agree that ALS affects nerve cells in the brain and spinal cord and causes muscle nerves to die. When this happens, the brain cannot control muscle movement. Patients in the late stages of the disease may be totally paralyzed. When the muscles in the chest stop working, patients no longer can breathe on their own. In most cases though, ALS does not affect senses, personality, intelligence, or memory. ALS patients remain aware of those around them and what is happening. They also can tell when the disease is getting worse. 

Dr. Kevin Horton speaking at the National ALS Advocacy Day in Washington D.C., May 9th, 2011

Dr. Kevin Horton, who leads ATSDR's National ALS Registry program, explains the value of the Registry for PALS and their families. "Before the Registry, ALS records were not centralized. This meant that we could only guess at the number of people affected by this disease based on several small studies." The National ALS Registry is a ground-breaking step in the fight against the disease because it will allow researchers to estimate how many people have the disease, understand more about who gets the disease, and potentially find a cure.  Also, the Registry contains brief survey questions for PALS to answer so that researchers can examine potential risk factors for the disease.

"Time is of the essence with ALS," says Dr. Horton. "We are working with patient support organizations such as the ALS Association and the ALS division of the Muscular Dystrophy Association to increase awareness of the Registry and its potential." Dr. Eric Sorenson, a leading neurologist who specializes in ALS at the Mayo Clinic, believes that a national registry will be a "tremendous resource." And, he says, identifying all cases of ALS in the US "… is critical to the success of the project."

The National ALS Registry collects information on PALS by using both existing data and self registration. Specifically, the information gathered by the ALS Registry can help researchers

• more accurately estimate the number of new cases of ALS identified each year,
• more accurately estimate the number of PALS at a specific point in time,
• better understand who gets ALS and what factors affect the disease, and
• improve care for people with this disease.

Dr. G. David Williamson speaking at the National ALS Advocacy Day in Washington, D.C. May 10, 2009

In addition, the Registry will continue to add new ALS risk factor surveys to increase the knowledge base for the disease.

During its first year, the ALS Registry began three new projects to enhance its accuracy and usability.

First, ATSDR is funding state and metropolitan area-based surveillance projects to assist the agency in evaluating the completeness of the National ALS Registry.  Florida, New Jersey, Texas, Philadelphia, Detroit and Atlanta are identifying neurologists who diagnose or provide care for PALS and checking their medical records to find possible cases of ALS that have not been reported to the surveillance project. This process is helping ATSDR evaluate the Registry's completeness by comparing state and local data to data from the same areas collected in the National ALS Registry. If some areas or groups are not well-represented in the Registry, ATSDR can find ways to reach these populations.

Second, ATSDR is developing a clinical research notification system to inform PALS about new research studies. When researchers send ATSDR information about their studies, ATSDR will verify that the study has been approved by the researcher's institution. Then the agency will email information about the study to PALS who might be eligible and have agreed to be contacted about such projects. PALS will have to contact the researcher directly if they want to be in the study.

Dr. Oleg Muravov, ATSDR, presenting at the Northeast ALS Conference in Bethesda, MD October 28, 2010

Finally, ATSDR is exploring the creation of a national bank of biological samples—blood, saliva, and tissue—known as a bio-registry. These samples would come from PALS in the ALS Registry who are interested in donating. Connecting the samples to the information collected from PALS will make the registry even more useful.

The first year of the National ALS Registry has been busy and productive, from enrolling registrants to creating programs that will improve the accuracy of the data received and recorded, as well as adding functions that will make the registry even more useful to researchers.  ATSDR and its partners look forward to continuing to use the Registry to address the needs of both PALS and ALS researchers in the future.

Learn more about the National ALS Registry