ATLANTA — In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Registry.
The registry is a national database that provides an opportunity to better understand one of the most common neuromuscular diseases worldwide, affecting people of all races and ethnic backgrounds – especially between the ages of 55 and 75.
The registry will gather and organize information about potential and known risk factors and symptoms of ALS. The information can help researchers evaluate shared risk factors common among patients, such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.
“A National ALS Registry provides researchers and physicians with more thorough information about ALS that will further empower them in the fight to treat and possibly prevent this disease,” said Christopher Portier, Ph.D., director of ATSDR. “Today, the cause or causes of ALS are largely unknown; this is the first nation-wide registry created to enhance our knowledge about this disease.”
ALS causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease leads to muscle weakness, paralysis, and eventually death. No one knows how many people are living with ALS, though scientists estimate 30,000 people in the United States have the disease.
Each entry in the registry includes a patient health history, work experiences, and family medical histories. Individual patient information on the registry will be confidential and will not be publicly released. Patients choosing to participate can visit www.cdc.gov/als to register.
“The more people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand this disease,” said Kevin Horton, Dr.P.H., ATSDR’s ALS program administrator. “In addition, the registry provides a means to share information about research findings and clinical trials.”
Editor’s Note: The Agency for Toxic Substance and Disease Registry, ATSDR, is a federal public health agency of the
U.S. Department of Health and Human Services. Its mission is to prevent harmful exposures and diseases related to toxic substances. It is commonly referred to as CDC’s sister agency.
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Release Date: Thursday, May 21, 2020
The Agency for Toxic Substances and Disease Registry (ATSDR) invites the public to hear from the scientists who conducted public health activities to understand the impact of exposure to contaminated drinking water at U.S. Marine Corps Base Camp Lejeune in North Carolina. A Community Assistance Panel (CAP) meeting will be held virtually on May 27, 2020 at 9:00 a.m.
Release Date: Wednesday, January 29, 2020
The Agency for Toxic Substances and Disease Registry (ATSDR) invites the public to hear from the scientists who conducted public health activities to understand the impact of exposure to contaminated drinking water at U.S. Marine Corps Base Camp Lejeune in North Carolina. A Community Assistance Panel (CAP) business meeting will take place on February 13, 2020 at 9:00 a.m. in Atlanta, Georgia.
Release Date: Monday, December 17, 2018
(Atlanta)-- The Agency for Toxic Substances and Disease Registry (ATSDR) invites the public to hear from the scientists who conducted public health activities to understand the impact of exposure to contaminated drinking water at U.S. Marine Corps Base Camp Lejeune in North Carolina. A Community Assistance Panel (CAP) business meeting, which is open to the public, will take place on January 30, 2019 at 9:00 a.m. in Atlanta, Georgia.
Release Date: Wednesday, July 18, 2018
(Atlanta)-- The Agency for Toxic Substances and Disease Registry (ATSDR) invites the public to hear from the scientists who conducted public health activities to understand the impact of exposure to contaminated drinking water at U.S. Marine Corps Base Camp Lejeune in North Carolina. A Community Assistance Panel (CAP) business meeting, which is open to the public, will take place on August 8, 2018 at 9:00 a.m. in Atlanta, Georgia.
Release Date: Wednesday, January 10, 2018
(Atlanta) - The Agency for Toxic Substances and Disease Registry (ATSDR) invites the public to hear updates of ongoing public health activities from the scientists who conducted public health studies to understand the impact of exposure to contaminated drinking water at U.S. Marine Corps Base Camp Lejeune in North Carolina.
Release Date: Monday, March 09, 2009
The updated edition of ToxProfilesTM, a two-CD ROM set featuring updated information on more than 180 chemicals and hazardous substances as well as an improved search engine, is now available from the Agency for Toxic Substances and Disease Registry (ATSDR).
Release Date: Tuesday, March 25, 2008
The Agency for Toxic Substances and Disease Registry (ATSDR) has released its updated ToxProfilesTM 2007 two-CD ROM set featuring information on more than 180 hazardous substances as well as an improved search engine. ToxProfilesTM 2007 is a useful resource for health professionals, researchers, students, media and others interested in the health effects from exposure to hazardous substances.
Release Date: Tuesday, March 22, 2005
A Toxicology Curriculum for Communities Training Manual, a guide that offers educational training tactics to communities affected by hazardous exposures, was released by the Agency for Toxic Substances and Disease Registry (ATSDR).
Release Date: Tuesday, February 22, 2005
Community and Tribal Subcommittee of the Board of Scientific Counselors (BSC), Centers for Disease Control and Prevention (CDC), National Center for Environmental Health (NCEH)/Agency for Toxic Substances and Disease Registry (ATSDR): Teleconference
Release Date: Friday, October 22, 2004
The Agency for Toxic Substances and Disease Registry (ATSDR) released the ATSDR ToxProfiles 2004 and accompanying ToxFAQsTM CD-ROM, featuring updated toxicologic and epidemiologic information, interaction between chemical mixtures and chemical-specific fact sheets.
Release Date: Friday, August 27, 2004
No on-site contaminants or dust releases from the Atlantic Station Redevelopment Project are at levels that would cause adverse health effects, according to the public health consultation the Agency for Toxic Substances and Disease Registry (ATSDR) is releasing today. The project is under multiphase construction near downtown Atlanta.
Release Date: Friday, February 27, 2004
A case study on Iodine 131 (I-131) is now available on the ATSDR internet site http://www.atsdr.cdc.gov/HEC/CSEM/iodine/index.html. This case study discusses the ways in which people were exposed to I-131 in the environment, the physical effects, and thyroid tumors of past I-131 exposures.
Release Date: Tuesday, January 27, 2004
ATSDR today announced the release of the ATSDR ToxFAQs and ToxFAQ en Español 2003 CD-ROM, which features a series of chemical-specific fact sheets summarizing hazardous substances. ToxFAQs are accessible in both English and Español on the ATSDR Web site.
Release Date: Wednesday, October 29, 2003
A public health consultation on the Atlantic Station Redevelopment site in Atlanta, Ga., has been issued by ATSDR for public review and comment. The agency categorized the site as no apparent public health hazard and has extended the public comment period through Nov. 30.
Release Date: Friday, August 01, 2003
The health consultation for Atlanta's Atlantic Station redevelopment project finds there is no apparent public health hazard from contamination on the site. The document is available for public review and comment through Sept. 2.
Release Date: Friday, January 10, 2003
ATSDR released seven updated toxicological profiles for hazardous substances found at EPA National Priorities List sites. Five other profiles have been updated and are released for public comment through Feb 24. These will be released as final after ATSDR's review of comments received from the public.
Release Date: Wednesday, January 08, 2003
ATSDR's Voluntary Research Program Works with Industry Groups To Fill Priority Research Needs on Hazardous Substances: Recent Computer Modeling Study Predicts No Effects of Methylene Chloride on Human Immune System
Release Date: Monday, February 25, 2002
The Agency for Toxic Substances and Disease Registry (ATSDR) will host a meeting of its Community and Tribal Subcommittee. The primary agenda items for the meeting include: an update on ATSDR's Mission; ATSDR's Fiscal Year 2002 Annual Plan of Work at Department of Defense facilities; ATSDR's Strategic Plan; ATSDR's Public Health Assessment Guidance Manual Overview; and ATSDR Environmental Justice Update. Meetings are open to the public, limited by available space.
Release Date: Thursday, November 08, 2001
ATSDR will host two meetings of its Community and Tribal Subcommittee (CTS) on Tuesday, November 13, and Wednesday, November 14, 2001, at the Sheraton, Colony Square Hotel, 188 14th Street, Atlanta, Georgia.
Release Date: Thursday, November 08, 2001
The Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of U.S. Department Health and Human Services, today announced the availability of the final version of its public health assessment for the Joliet Army Ammunition Plant in Joliet, Illinois.
Release Date: Wednesday, December 20, 2000
The Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, announced today the availability of seven toxicological profiles. The toxicological profiles just released are those for aldrin/dieldrin (update), beryllium (update), creosote (update), DDT/DDD/DDE (update), di(2-ethylhexyl)phthalate (update), hexachlorobenzene (update), and methoxychlor (update).
Release Date: Friday, October 20, 2000
ATSDR announced today the release of its draft health consultation for the Bulk Distribution Center in Atlanta, Georgia. ATSDR prepared the health consultation in response to a request from residents living near the site who expressed concerns about operations at the center and potential human health effects. ATSDR visited the site and reviewed available environmental data related to the site. This health consultation summarizes ATSDR activities and findings.
Release Date: Sunday, February 27, 2000
The Agency for Toxic Substances and Disease Registry (ATSDR) will host a meeting of its Community and Tribal Subcommittee on Tuesday, May 2, and Wednesday, May 3, 2000, at the Holiday Inn Select Hotel, 130 Clairmont Road, Decatur, Georgia.
Release Date: Monday, June 07, 1999
The Agency For Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, announced today the release of its latest Trichloroethylene (TCE) Subregistry Registrant Report.
Release Date: Monday, April 19, 1999
ATSDR announced today its updated Toxicological Profile for Mercury. This document replaces an earlier profile that was released in 1994.
Release Date: Wednesday, February 17, 1999
The Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, has released its latest update of the Superfund-mandated Substance-Specific Applied Research Program (SSARP). The update, which was published in the Federal Register on January 15, 1999, provides information on the agency's progress to identify and fill research needs for the most hazardous substances found at waste sites.
Release Date: Tuesday, February 16, 1999
The Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, announced today the establishment of its Office of Tribal Affairs. The office is intended to better serve the needs of American Indian and Alaska Native tribes.
Release Date: Thursday, January 14, 1999
The Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, announced today the availability of 12 toxicological profiles. ATSDR is directed by Congress to produce toxicological profiles for hazardous substances found at National Priorities List (NPL) sites. Each toxicological profile examines, summarizes, and interprets available toxicologic information and epidemiologic evaluations on a given hazardous substance. Toxicological profiles are reviewed periodically and updated as significant new information becomes available.