News from the National ALS Registry
Below are the latest news from the Registry such as research notifications, new publications, and events.
Another fatal case of ALS: What can we do?
“Losing beloved football player Dwight Clark is just another reminder of how important the National ALS Registry is to support research. We need to help better understand the causes of this terrible disease and empower patients and researchers,” states Dr. Paul Mehta, a medical epidemiologist at the Centers for Disease Control and Prevention (CDC) /Agency for Toxic Substances and Disease Registry (ATSDR). Dr. Mehta is the principal investigator leading the National ALS Registry, the only national population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and what may cause it.
Many people know ALS as Lou Gehrig’s disease, named after the famous baseball player who got the illness and had to retire in 1939 because of it. ALS is a disease that affects the nerve cells that make muscles work in both the upper and lower parts of the body. This disease makes the nerve cells stop working and die. The nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.
Almost 16,000 people in the United States were living with ALS in 2014; every year doctors diagnose about 5,000 more people. No one knows what causes most cases of ALS. ATSDR scientists have been studying many factors that could be linked with ALS such as heredity and environmental exposures. Other scientists have looked at diet or injury, including head trauma from sports. Although no cause has been found for most cases of ALS, a number of inherited factors have been found to cause familial ALS. In the future, scientists may find that many factors together cause ALS.
If you or someone you care about has ALS, you can learn more about the National ALS Registry here. Because everyone’s diagnosis is personal. And every personal story can help contribute more to fighting this terrible disease.
ALS: Much-Needed Help for a Disease With No Cure
- Larson T, C, Kaye W, Mehta P, Horton D, K, Amyotrophic Lateral Sclerosis Mortality in the United States, 2011–2014. Neuroepidemiology 2018;:96-103.
- Harrison D, Mehta P, van Es M, Stommel E, Drory V, Nefussy B, van den Berg L, Crayle J, & Bedlack R. “ALS reversals”: demographics, disease characteristics, treatments, and co-morbidities. Amyotroph Lateral Scler Frontotemporal Degener; 2018; DOI: 10.1080/21678421.2018.1457059.
- ATSDR has released the third report on the results of data gathered by the National ALS Registry. Learn more at: Third National ALS Registry Report
New ALS Research Notifications:
Click here to see clinical trials and epidemiological research studies that are using the Registry to recruit and how you can potentially participate. Note, by enrolling in the Registry, you can receive these notifications automatically in your registered email address.
- Page last reviewed: August 24, 2017
- Page last updated: August 24, 2017
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