ALS-Lou Gehrig’s Disease-Learn More
May is ALS Awareness Month. Far too little is known about ALS (Lou Gehrig's disease). Learn more about how the National ALS Registry is changing that.
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 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 who are listed in the Registry. Patients and their families can turn to the Registry for updated links for 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 listed in the Registry each year;
- estimate the number of people listed in the Registry who have ALS at a specific point in time;
- better understand who gets ALS and what factors affect the disease among those listed in the Registry;
- 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.
Since the Registry's launch in late 2010, thousands of ALS cases have been identified and enrollees from all 50 states have taken part. ATSDR expects to make the first Registry report available by spring 2014 and will release subsequent reports annually.
In addition to enrolling persons with ALS, additional features have been added to enhance the Registry for both patients and researchers.
- State and metropolitan area-based ALS surveillance assists researchers in evaluating the completeness of the Registry, obtaining reliable information on the frequency of the disease, and describing the characteristics of those living with ALS. Three states (Florida, New Jersey, and Texas) and 8 cities (Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia, and San Francisco) have taken part. These surveillance projects have concluded and the findings will be released beginning in 2014. These data will be compared to the Registry data for completeness purposes once the first national report has been finalized.
- A research notification system informs people with ALS about new research studies (e.g., clinical trials, epidemiological studies). Since enrolling people with certain diseases and conditions can be challenging for researchers, ATSDR created this system to directly link ALS patients with researchers. To date, thousands of Registry enrollees have been notified via email about clinical trials and/or studies for which they are eligible to participate.
- A biorepository study evaluates the feasibility of collecting biospecimens (blood, hair, nails, tissue, etc.) from individuals around the United States who have enrolled in the National ALS Registry. Dozens of biospecimens already have been collected from Registry enrollees. Connecting biospecimens to information already collected from enrollees will make the Registry even more useful to researchers.
- Research funds enable external studies that provide a better understanding of the disease. Additionally, such research helps ATSDR prioritize topics for future ALS risk factor surveys.
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.
Learn more about the National ALS Registry today!