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In an effort to gather important data to help better recognize risk factors and other problems facing Americans with amyotrophic lateral sclerosis, the federal Agency for Toxic Substances and Disease Registry has launched the National ALS Registry.
The agency announced the registry’s launch in a written statement Oct. 20 in which it said it is seeking information that can “help researchers evaluate shared risk factors common among patients such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.”
Christopher Portier, Ph.D., the agency’s director, explained that the registry will seek to understand pathogenic mechanisms of the disease. “Presently, the cause or causes of ALS are largely unknown; this registry is our first nation-wide effort to enhance our knowledge about this disease,” he said in the statement.
“The more people participate in the registry, the more comprehensive and diverse that data will be to help researchers and physicians better understand the disease,” Kevin Horton, DrPH, the agency’s ALS program administrator, noted in the statement. Dr. Horton added that the registry can also help researchers share information and promote more clinical trials in this area.
According to the ATSDR, each registry entry will include a patient health history, work experiences, and family medical histories. All information will be confidential and will not be released publicly. Patients who want to participate are encouraged to visit www.cdc.gov/als to register.
ALS –also known as Lou Gehrig’s disease – is considered one of the most common neuromuscular diseases worldwide, and it is estimated that 30,000 people currently live with the disease in the United States. According to the Centers for Disease Control and Prevention, about 5,000 people are diagnosed with ALS each year.
In an effort to gather important data to help better recognize risk factors and other problems facing Americans with amyotrophic lateral sclerosis, the federal Agency for Toxic Substances and Disease Registry has launched the National ALS Registry.
The agency announced the registry’s launch in a written statement Oct. 20 in which it said it is seeking information that can “help researchers evaluate shared risk factors common among patients such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.”
Christopher Portier, Ph.D., the agency’s director, explained that the registry will seek to understand pathogenic mechanisms of the disease. “Presently, the cause or causes of ALS are largely unknown; this registry is our first nation-wide effort to enhance our knowledge about this disease,” he said in the statement.
“The more people participate in the registry, the more comprehensive and diverse that data will be to help researchers and physicians better understand the disease,” Kevin Horton, DrPH, the agency’s ALS program administrator, noted in the statement. Dr. Horton added that the registry can also help researchers share information and promote more clinical trials in this area.
According to the ATSDR, each registry entry will include a patient health history, work experiences, and family medical histories. All information will be confidential and will not be released publicly. Patients who want to participate are encouraged to visit www.cdc.gov/als to register.
ALS –also known as Lou Gehrig’s disease – is considered one of the most common neuromuscular diseases worldwide, and it is estimated that 30,000 people currently live with the disease in the United States. According to the Centers for Disease Control and Prevention, about 5,000 people are diagnosed with ALS each year.
In an effort to gather important data to help better recognize risk factors and other problems facing Americans with amyotrophic lateral sclerosis, the federal Agency for Toxic Substances and Disease Registry has launched the National ALS Registry.
The agency announced the registry’s launch in a written statement Oct. 20 in which it said it is seeking information that can “help researchers evaluate shared risk factors common among patients such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.”
Christopher Portier, Ph.D., the agency’s director, explained that the registry will seek to understand pathogenic mechanisms of the disease. “Presently, the cause or causes of ALS are largely unknown; this registry is our first nation-wide effort to enhance our knowledge about this disease,” he said in the statement.
“The more people participate in the registry, the more comprehensive and diverse that data will be to help researchers and physicians better understand the disease,” Kevin Horton, DrPH, the agency’s ALS program administrator, noted in the statement. Dr. Horton added that the registry can also help researchers share information and promote more clinical trials in this area.
According to the ATSDR, each registry entry will include a patient health history, work experiences, and family medical histories. All information will be confidential and will not be released publicly. Patients who want to participate are encouraged to visit www.cdc.gov/als to register.
ALS –also known as Lou Gehrig’s disease – is considered one of the most common neuromuscular diseases worldwide, and it is estimated that 30,000 people currently live with the disease in the United States. According to the Centers for Disease Control and Prevention, about 5,000 people are diagnosed with ALS each year.