The ALS Registry Offers Hope
Because learning more about ALS is an important step in the battle to defeat it, the National ALS Registry gathers confidential health information from people who are living with the disease to learn more about what causes ALS and possibly lead to better treatments.
May is ALS awareness month. In 1939, Lou Gehrig, a beloved baseball player, first brought attention to this disease that sadly bears his name. Over 78 years later, researchers have made some inroads into understanding some of the causes and are working hard to put together pieces of this puzzle.
Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. To date, the cause of ALS is unknown, and there is still no known cure. The disease strikes quickly, usually leading to death within 2–5 years of diagnosis.
Because learning more about ALS is an important step in the battle to defeat it, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has developed the National ALS Registry to gather confidential health information from people who are living with the disease. The Registry is the only research project in the United States that collects and analyzes data nation-wide on persons living with ALS. Once a person living with ALS registers via the secure web portal, he/she can take risk factor surveys, be connected with support groups, and learn about clinical trials. You can learn more about the Registry at www.cdc.gov/ALS.
The Registry also funds research to help find potential causes and risk factors associated with ALS. By enrolling in the Registry, persons living with ALS have access to clinical trials and studies. Approximately 95% of individuals who have enrolled in the Registry seek to learn more about research studies and clinical trials.
The Registry not only serves those living with ALS, but also funds researchers who are striving to make a difference in the treatment and prevention of ALS. Dr. Paul Mehta, a medical expert with the ATSDR, explains, “The Registry information can help doctors and scientists learn more as we work towards what causes ALS and help find better treatments.”