ALS Registry Anniversary
Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease) is a rapidly progressive, fatal neurological disease that affects nerve cells in the brain and spinal cord and causes muscle nerves to die. When this happens, the brain cannot initiate and control voluntary muscle movement. Patients in the late stages of the disease may be totally paralyzed and unable to speak or breathe on their own. ALS does not typically affect a person’s senses, personality, intelligence, or memory. People living with the disease remain aware of those around them and what is happening. Since there is no cure for the disease, a majority of those with ALS will die 2 -5 years after they are diagnosed. Unfortunately, the cause(s) of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.
Like many chronic diseases, ALS is not a reportable condition in the United States*. This means that scientists do not accurately know how many people are living with the disease. Researchers estimate that about 5,000 people are diagnosed with ALS each year, but no one knows exactly how many people in the United States have the disease.
In 2008, Congress enacted the ALS Registry Act, which charged the Centers for Disease Control and Prevention (CDC) to develop a registry of ALS cases in the United States. On October 19, 2010, the federal Agency for Toxic Substances and Disease Registry (ATSDR), sister agency to CDC, launched the National ALS Registry. This Registry is the only population-based ALS registry for the United States and takes new approaches to identify new and existing ALS cases. Specifically, the Registry collects information on people with ALS by using both existing data (e.g., from Medicare, Medicaid, and Department of Veterans Affairs) and self-registration data via a secure web portal. The information gathered by the National ALS Registry can help researchers
- more accurately estimate the number of new cases of ALS identified each year,
- more accurately estimate the number of people with ALS at a specific point in time, and
- better understand who gets ALS and what factors affect the 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, new 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). Because 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.
- A mobile app makes it easy for people with ALS and caregivers to find the nearest ALS clinics and support groups. The app currently can be downloaded to iPads and soon will be available for Android devices.
ATSDR and its partners continue to advance the Registry to address the future needs of both people with ALS and ALS researchers.
* Except in Massachusetts
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