ALS Registry Turned 6
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Learn more about how persons with ALS (PALS) are helping scientists learn more about this mysterious disease by registering and taking risk factor surveys.
It’s been 77 years since Lou Gehrig made his famous “Luckiest Man on Earth” speech when he retired from baseball in 1939 after his diagnosis of ALS. Much about ALS still remains a mystery. The National ALS Registry is working with persons who are living with ALS, researchers, neurologists, ALS support organizations, and others to help further ALS research.
“At the heart of the matter are 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.
Image for Social Media to increase awareness of the ALS RegistrySix Years and Counting
During the past 6 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, and
- integrating a full-scale biorepository into the Registry.
Visit the National ALS Registry for more information.
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.
Learn more about how the Registry works through the What is the National 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).
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. The Registry’s second report was published this past August. This report found that nearly 16,000 persons were living with ALS in the US in 2013. ALS continues to be more common in whites, males, and persons between the ages of 60-69. This is the only population-based Registry in the United States.
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 60,000 surveys have been completed by PALS. The Registry’s web portal now contains risk factor data on the largest number of persons with ALS in the U.S. ATSDR published initial results from the Registry’s risk factor survey data in the Registry’s first report[575 KB], and recently published preliminary results of the risk factor survey data in April, 2016.
Research collaborators at the 2016 Annual ALS Surveillance MeetingResearch
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 they are eligible for. This year the Registry helped recruit PALS for a study to describe the natural history and biomarkers of the C90RF72 gene and frontotemporal dementia, a Phase 3 clinical trial by Cytokenetics for the drug Tirasemtiv; and a study to better understand the progression of ALS. To date, ATSDR has helped 23 institutions domestically and abroad recruit for research projects. Over 75,000 emails have been sent to Registry-enrolled PALS since 2013. Overall, feedback from researchers has been positive.
Funding
ATSDR is also providing funding for academic institutions to conduct research to learn more about the risk factors for ALS. During 2016, three new external ALS studies were funded through the Registry. To date, ATSDR has funded 12 research studies domestically and one international study. Information gleaned from the research will help ATSDR prioritize topics for future surveys.
National ALS Biorepository
Additionally, the Registry is preparing to launch the National ALS Biorepository this fall, 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 15 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.
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