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Fifth Anniversary of the National ALS Registry

Graphic: 5th AnniversaryIt's been over one year since the incredible Amyotrophic Lateral Sclerosis (ALS) Ice Bucket Challenge. Not since Lou Gehrig made his famous "Luckiest Man on Earth" speech in 1939 has so much public attention been focused on ALS. The Ice Bucket Challenge returned this past August and will every year thereafter until a cure is found.

"At the heart of the matter are persons with ALS (PALS), their families, and loved ones. The ALS team here at ATSDR is honored and humbled to be working with such courageous and dedicated people. They inspire our work every day," says Dr. Kevin Horton, administrator of the National ALS Registry.

Learn how registering and being counted will enable the National ALS Registry to help scientists learn more about this mysterious disease.

Graphic: National ALS Registry - Be Counted

Amyotrophic Lateral Sclerosis (ALS) aka Lou Gehrig’s Disease

What is ALS?

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, causing nerves in the muscle to die, thereby affecting voluntary muscle movement. On average, persons with the disease die within two to five years after being diagnosed. We still know very little about ALS, including its cause(s), and why ALS strikes some people and not others, as well as how to stop it.

What is the ALS Registry?

To learn more about the disease, the federal Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Registry in October 2010. The Registry gathers data about ALS from people who have the disease in the U.S. through an online web portal, as well as from existing national health databases (Medicare, Medicaid, and the Veterans Administration).

Graphic: Get the Facts. Learn more at

Learn more about how the Registry works through the Get the Facts Infographic [192 KB].

The main goals of the Registry are to:

  • Describe the incidence and prevalence of ALS,
  • Describe the demographics of those with ALS, and
  • Examine risk factors for the disease.

Learn more about how the Registry works through the Get the Facts Infographic [192 KB].

How is the Registry Fulfilling its Goals?

Since the Registry's launch, ATSDR has been able to provide information about the incidence, prevalence and demographic characteristics of PALS in the U.S.; for example, the Registry's initial report [575 KB] quantified the first prevalence and demographic estimates of ALS for the U.S. Additionally, findings from the State and Metropolitan Area Based ALS Surveillance projects provide detailed prevalence, incidence, and demographic estimates for ALS in 3 states and 8 metropolitan areas of the country. These results have been published and can be viewed on the Registry's website.

ATSDR is also conducting a number of different activities to examine the potential risk factors for ALS. Through the Registry's 17 online risk factor modules, ATSDR is collecting detailed information from PALS on such topics as occupation, military history, residential history, and trauma history to better learn about the potential risk factors for developing the disease. To date, approximately 50,000 surveys have been completed by PALS. ATSDR is currently analyzing the data and will publish the findings as soon as they are available.

Research is critical to help scientists and PALS better understand the disease. The overarching goal of the research is to examine potential risk factors for developing ALS. To help identify these potential risk factors, the Registry's Research Notification Mechanism connects PALS with scientists who are recruiting participants for their ALS studies and clinical trials. Since this became available, over 95% of Registry-enrolled PALS have chosen to receive email notifications about research opportunities in which they are eligible. To date, ATSDR has helped 20 institutions domestically and abroad recruit for research projects. Over 72,000 emails have been sent to Registry-enrolled PALS since 2013. Overall, feedback from researchers has been positive.

ATSDR is also providing funding for academic institutions to conduct research to learn more about the risk factors for ALS. To date, ATSDR has funded 10 research studies around the country. Information gleaned from the research will help ATSDR prioritize topics for future surveys.

Additionally, the Registry is preparing to launch the National ALS Biorepository, which will:

  • enroll from the Registry a representative, population-based sample of participants;
  • increase the number of biological specimens available for research on ALS; and
  • allow for the correlation of biomarkers with extensive epidemiologic data collected by the National ALS Registry.

Through the pilot biorepository that operated from 2011 through September 2015, ATSDR collected in-home and post-mortem biospecimens from Registry-enrolled PALS. Samples collected included blood, urine, hair, and fingernail clippings, from 330 participants and brain tissue, spinal cords, cerebral spinal fluid, and pieces of muscle, skin, and bone from 16 participants. Pairing the PALS biospecimens with their existing epidemiological and risk-factor data will make this biorepository a rich source for scientists who are conducting research into the cause(s) of ALS.

Five Years and Counting

During the past 5 years of the National ALS Registry's existence, ATSDR has made great strides into learning more about ALS. However, we still have a long way to go to fully understand this disease. Regardless, we are extremely grateful to all PALS around the U.S. who have dedicated their valuable time and effort to help advance the science of ALS. Without these PALS, the Registry would not be where it is today.

The National ALS Registry is:

  • providing the first and only population-based estimate of ALS prevalence and incidence for the U.S.;
  • fulfilling its Congressional mandate to describe the incidence, prevalence, demographics, and risk-factors for persons living with ALS;
  • being used as a recruitment tool for clinical trials and epidemiologic research;
  • providing funds for external research;
  • integrating a full-scale biorepository, and
  • collaborating with all its partners to maximize enrollment.
  • Page last reviewed: October 8, 2015
  • Page last updated: October 8, 2015
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