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

    CDC experts discuss the challenges for research, drug development, patient care, and the past, present and future of the national registry.
    • Overview

      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.

      In this session of Grand Rounds Nation from CDC's Public Health Grand Rounds, experts discuss the challenges for research, drug development, patient care, and the past, present and future of the national registry.

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