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ALS-Lou Gehrig’s Disease-Learn More

Many people know amyotrophic lateral sclerosis (ALS) as Lou Gehrig's disease, named after the famous baseball player who retired in 1939 because of it. But far too little is known about what causes this disease.

The National ALS Registry is a ground-breaking step in the fight against ALS. The Registry collects, manages, and analyzes data about people with ALS. It gathers data about who has the disease and where it occurs. Researchers can use Registry data to detect disease pattern changes over time and identify whether there are common risk factors among ALS patients. Patients and their families can turn to the Registry for updated links for patient resources such as ALS clinical trials.

The goal of the Registry is to gather information that can be used to

  • estimate the number of new cases of ALS each year;
  • estimate the number of people who have ALS at a specific point in time;
  • better understand who gets ALS and what factors affect the disease;
  • examine the connection between ALS and other motor neuron disorders that may be confused with ALS, misdiagnosed as ALS, or in some cases progress to ALS; and
  • improve care for people with this disease.

As part of the National Registry, the federal Agency for Toxic Substances and Disease Registry (ATSDR) is collecting data from available national databases. People living with ALS can also add their information to the National Registry by visiting www.cdc.gov/als.

In addition to enrolling persons with ALS, ATSDR also has undertaken various initiatives to help strengthen the Registry. These include implementing active surveillance activities to help evaluate the completeness of the Registry in three states and eight metropolitan areas, funding a bioregistry feasibility study to link potential specimen data collected (e.g., blood, saliva, and tissue) with existing Registry surveys, and funding external research on ALS risk factors and burden of disease. Additionally, ATSDR has launched a new research notification mechanism that puts researchers directly in contact with Registry enrollees who are interested in taking part in new clinical trials and epidemiologic studies.

No accurate picture exists showing who has ALS. But the more people living with ALS participate in this Registry, the more accurate the picture will become. To learn more, visit www.cdc.gov/als.

 

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  • Page last reviewed: May 6, 2013
  • Page last updated: May 6, 2013
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