National Amyotrophic Lateral Sclerosis (ALS) Registry: Impact, Challenges, and Future Directions
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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.
Join us for this session of Public Health Grand Rounds as experts discuss the challenges for research, drug development, patient care, and the past, present and future of the national registry. Hear our panelist, Ed Tessaro, explain what it’s like to live with ALS.
Dr. John Iskander and Becky Kidd discuss her life with ALS. Listen to her perspective of the National Registry, which she calls “essential.” Hear her frank, hopeful and heart wrenching reflections on what it’s like to have been living with ALS for the past five years.
Dr. John Iskander and Dr. Paul Mehta discuss the knowns and unknowns of ALS. Discover who’s at risk for developing ALS and the possible causes and outcomes of this fatal disease. Learn how the National ALS Registry helps to fund critically needed research and how it works to help researchers connect ALS patients to clinical trials. Persons with ALS can join the National Registry and take the ALS Risk Factor Surveys. Visit the ALS website to learn more.
From current knowledge about ALS disease, how far should we go when investigating probable cluster? We have 4 cases in people over 60 years old between 2012 and 2016 — all of them had been working in the same location.
Cluster investigations for ALS or any other conditions are handled by local and state public health officials. In addition, in order to investigate a disease cluster, etiology must be determined. ALS currently has no known etiology.
Why not push to make it a notifiable disease?
Massachusetts is the only state where ALS is reported to state health officials. To make any disease notifiable is generally a state legislative process. Each state must determine the feasibility of making a disease such as ALS notifiable or not. In general, communicable disease are notifiable, with the exception of certain cancers.
- Kevin Horton, DrPH, MSPH
- Chief, Environmental Health and Surveillance Branch
Division of Toxicology and Human Health Sciences
Agency for Toxic Substances and Disease Registry, CDC
"Overview of the National ALS Registry – Past, Present, Future"
- Paul Mehta, MD
- Principal Investigator
Environmental Health and Surveillance Branch
Division of Toxicology and Human Health Sciences
Agency for Toxic Substances and Disease Registry, CDC
"The Known and Unknowns about ALS"
- Edward J. Kasarskis, MD, PhD
- Professor, Department 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"
- John Iskander, MD, MPH
- Scientific Director
- Phoebe Thorpe, MD, MPH
- Deputy Scientific Director
- Susan Laird, MSN, RN
- Communications Director
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CDC Course Code: PHGR10
CPE UAN: 0387-0000-17-018-H04-P
For more information, see Grand Rounds Continuing Education.
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