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Registries are valuable tools that allow health professionals to track and investigate illness and recovery resulting from disasters, and help create guidelines that can save lives and reduce injuries in future disaster settings. The federal Agency for Toxic Substances and Disease Registry and the New York City Department of Health and Mental Hygiene established the World Trade Center (WTC) Health Registry in 2002 with the goal of tracking the health of individuals seriously exposed to the terrorist attack.

Enrollment in the WTC Health Registry was voluntary for people who lived, worked or went to school in the area of the WTC disaster, or were involved in rescue and recovery efforts. Registrants participated in a thorough and confidential health survey at the time of enrollment. Each registrant answered a series of questions about where they were on September 11, 2001, their experiences, and the status of their health. This baseline data allows health professionals to compare the health of those most exposed to the events of September 11, 2001 with the health of the general population. Regular follow-up surveys, which will provide invaluable information about the emergence of long term health problems, already have begun. In November 2006, the Registry launched its first follow-up survey for adults and in June 2006, the Registry began a survey of children and adolescents.

In addition to completing surveys conducted by the WTC Health Registry, more than 90% of registrants have indicated that they are interested in participating in more focused studies about the impact of the WTC disaster on their health. Some studies conducted to date have examined how evacuation of the collapsed and damaged buildings occurred; psychological responses to the WTC disaster; and the mental health needs of children of first responders.

All findings from the WTC Health Registry are shared with registrants and the public to help all individuals affected by the terrorist attack make informed decisions about their health. The Registry also shares findings with medical providers who may care for persons highly affected by the WTC disaster.

How the Information Helps Us

The WTC Health Registry monitors the health of individuals highly affected by the WTC disaster through periodic surveys focused on physical and mental health.  By looking at registrants responses to health questions over time, and matching this information to other health registries, much can be learned about the long-term health effects of the WTC disaster.

Who's Enrolled

As of 2007, 71,437 individuals remain enrolled in the WTC Health Registry. Although nearly 90% of registrants reside in New York including almost 50,000 in New York City or New Jersey there are registrants from every other U.S. state and from 15 other countries.

The enrollees are more likely to be male (54%) than female (46%). The majority (56%) were 25 to 44 years old on September 11, 2001. Sixty-three percent are non-Hispanic white, 81% had at least some college education, and 47% had a household income between $35,000 and $100,000 in 2002. More than half reported being caught in the dust and debris cloud that resulted from the collapse of the WTC towers.

Although registrants are grouped in the categories below, 28% met the criteria for more than one category with the greatest overlap among people who were present in lower Manhattan on the morning of September 11, 2001 and who also were either workers or residents. Among 160;registrants, on 9/11:

• More than 43,000 were building occupants and passers-by south of Chambers Street including 4,000 survivors of the WTC towers.
• Nearly 15,000 were building residents living south of Canal Street
• There were approximately 2,500 children and staff in schools south of Canal Street
• Nearly 31,000 were rescue, recovery and cleanup workers and volunteers at the WTC Site, WTC Recovery Operations site on Staten Island or on the barges during the period 9/11/01 to 6/30/02. This group includes more than 3,000 firefighters and nearly 4,000 police officers.

Select Research

Brackbill RM, Thorpe LE, DiGrande L, et al. Surveillance for World Trade Center disaster health effects among survivors of collapsed and damaged buildings . Morbidity and Mortality Weekly Report Surveillance Summary. 2006. 55;1-18.

Perrin MA, DiGrande L, Wheeler K et al. Differences in PTSD prevalence and associated risk factors among World Trade Center rescue and recovery workers. The American Journal of Psychiatry (in press).

More Research