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National Amyotrophic Lateral Sclerosis (ALS) Registry – Impact, Challenges, and Future Directions

Tuesday, April 18, 2017 at 1:00 p.m. (ET)

Lou Gehrig

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.



Beyond the Data — National ALS Registry

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.

Living 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.

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

Additional Resources:

CDC Science Clips, Vol. 9, Issue 15, April 18, 2017 – featuring CDC Public Health Grand Rounds

Hear Why People with ALS Joined the Registry

Continuing Education

This session is available for Continuing Education. Click here for more information.

  • Page last reviewed: March 31, 2017
  • Page last updated: March 31, 2017
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