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National Amyotrophic Lateral Sclerosis (ALS) Registry – impact, challenges, and future directions
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April 18, 2017
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Description:Tuesday, April 18, 2017, at 1:00 p.m. ET
Amyotrophic Lateral Sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, fatal neurological disease caused by degeneration of motor neurons in the brain and spinal cord. Researchers don’t know what causes ALS and there is no cure. Approximately 80 percent of persons with ALS die within 2-5 years of diagnosis.
What is known is that ALS continues to be more common in whites, males and persons between the ages of 60-69. US military veterans are disproportionately affected. For example, veterans who served in the Gulf Region were twice as likely to develop ALS as those deployed elsewhere during the same timeframe.
The National ALS Registry was created in 2010 to help scientists learns more about who gets ALS and what causes it. Persons with ALS can join the registry and complete brief surveys that help researchers understand possible risk factors for the disease, such as genetics, environmental, and occupational exposures. They also can choose to be alerted about research studies and clinical trials and have the option to contact the researchers to find out more.
Presented by: Kevin Horton DrPH, MSPH, Chief, Environmental Health and Surveillance Branch, Division of Toxicology and Human Health Sciences, Agency for Toxic Substances and Disease Registry (ATSDR) [“Overview of the National ALS Registry – Past, Present, Future”]; Paul Mehta, MD, Principal Investigator, National ALS Registry, Environmental Health and Surveillance Branch, Division of Toxicology and Human Health Sciences, Agency for Toxic Substances and Disease Registry (ATSDR) [“The Known and Unknowns about ALS”]; Edward J. Kasarskis, MD, PhD, Professor of Neurology, Cynthia Shaw Crispen Chair for ALS Research, University of Kentucky [“Challenges for Research, Drug Development, and Patient Care”]; Ed Tessaro, BA, Person Living with ALS [“Living with ALS: a Patient’s Story”].
Facilitated by: John Iskander, MD, MPH, Scientific Director, Public Health Grand Rounds; Phoebe Thorpe, MD, MPH, Deputy Scientific Director, Public Health Grand Rounds; Susan Laird, MSN, RN, Communications Director, Public Health Grand Rounds.
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