Agency for Toxic Substances and Disease Registry

Health registries

ATSDR maintains registries of people who were exposed to certain toxic substances or have certain diseases. Participation in these registries is voluntary, and individual data and personal information is kept private. The information collected is used by epidemiologists and other researchers to examine long-term health outcomes or risk factors for illness. It can also help doctors diagnose those health conditions in other individuals and treat them earlier. The agency also uses registries to contact registered individuals with important health information.

Tremolite Asbestos Registry

The Tremolite Asbestos Registry contains people who lived in or worked in Libby, Montana, while vermiculite was mined there; these people were at risk for exposure to the tremolite asbestos that was naturally occurring in the vermiculite. ATSDR began addressing public health concerns in Libby in 1999 and created the registry in 2004. The purpose of the registry was to monitor the long-term health effects of people in Libby exposed to tremolite asbestos and to assist with communicating important health information to registrants. Researchers have used the registry to study how asbestos exposure affects human health. This research has yielded several important findings. Registry data was used to conduct the first study of the relationship between asbestos exposure and respiratory problems in children. Another study using registry data found a significant relationship between asbestos exposure and death from cardiovascular disease.

World Trade Center Health Registry

The World Trade Center Health Registry was established in 2002 by ATSDR and the New York City Department of Health and Mental Hygiene to track the long-term physical and mental health effects of the September 11 attacks. The registry contains more than 71,000 people who lived, worked, or went to school near the World Trade Center site, as well as emergency response personnel who were involved in rescue and recovery efforts. It is the largest post-disaster health registry in the United States. Researchers use the registry to study the health effects of the disaster and to develop public health recommendations for future disasters. A 2009 study based on registry data found that posttraumatic stress disorder and asthma were the two most commonly reported conditions among registry participants 5 to 6 years after the disaster. The study found that 19% of adult participants reported new posttraumatic stress symptoms, and 10% of adult participants reported developing new asthma.

ALS Registry

ATSDR is starting a new registry for people with amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig's Disease). President George W. Bush signed the ALS Registry Act, which provided for establishment of the registry, on October 8, 2008. It is hoped that the registry will provide information on the prevalence of ALS and lead to a better understanding of factors that may be associated with the disease. The agency began registering people for the registry on October 20, 2010.