San Diego, California (NAPSI) - Efforts to track and analyze amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, have been sporadic in the U.S. until now.
The National ALS Registry gives persons living with ALS the chance to help scientists identify causes, treatments, and a possible cure from the disease.
ALS is a rapidly progressive, invariably fatal neurological disease that affects the nerve cells that make muscles work in both the upper and lower parts of the body; it causes nerve cells to stop working and die.
The congressionally-mandated National ALS Registry is designed to compile new and existing U.S. cases of ALS, shedding light on how many people actually suffer from the disease, and helping doctors and scientists better understand it. An estimated 20,000 to 30,000 people in the U.S. have ALS, but an accurate count does not yet exist; neither patients nor doctors are required to report newly diagnosed ALS cases.
The federal Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency of the Centers for Disease Control and Prevention (CDC), developed the National ALS Registry in 2010, and has been working hard since then to make sure that as many ALS patients as possible are counted.
The National ALS Registry is an online, secure database that collects basic information from persons with ALS. Patients can enroll themselves easily from anywhere they have Internet access. When they enroll, they answer brief questions about themselves and their lives, like if they’ve ever been in the military or if they smoke. This information is then used by researchers to learn more about the disease. The Registry also informs ALS patients about research trials they can join, and identifies support services in their communities, including ALS Association and Muscular Dystrophy Association chapters, offices, centers, and clinics.
The National ALS Registry will allow for more ALS research to be conducted than ever before and possibly help to defeat ALS—which could change the lives of future generations.
To learn more about the National ALS Registry and how to enroll, visit http://wwwn.cdc.gov/als/.