TABLE 1—

Examples of Environmental Health Registries Conducted by the Agency for Toxic Substances and Disease Registry

Registry	Target Population	Period of Operation	Enrollees, No.	Data Sources	Estimated Implementation Costs, $
National Exposure Registry	People exposed to hazardous substances in residential areas (trichloroethylene, benzene, 1,1,1-trichloroethane, Dioxin)	1989–2000	8 216	Interviewer-assisted self-reported surveys; a portion of health data was verified with medical records	6 million
Tremolite Asbestos Registry	Persons exposed to Libby vermiculite	2003–present	9 110	Self-reported surveys	3 million
World Trade Center Health Registry	Rescue and recovery workers, lower Manhattan residents; lower Manhattan office workers; passersby on September 11, 2001; students and staff in lower Manhattan schools	Wave 1: 2003–2004 Wave 2: 2006–2008 Wave 3: 2011–2012	71 434 46 602 43 134	Self-reported surveys	23.5 million
National Amyotrophic Lateral Sclerosis Registry	People with amyotrophic lateral sclerosis	October 2010–present January 2001–present	NAa	Self-reported surveys (Web portal), administrative databases (Medicare, Medicaid, Veterans Health Administration, Veterans Benefits Administration), and National Death Index	12 million

Note. NA = not applicable.

^aCurrently, number of enrollees cannot be disclosed, per Office of Management and Budget terms of clearance.