The Registry was developed to document and evaluate the long-term physical and mental health effects of 9/11 and gaps in care. Enrollment was open from September 2003 through November 2004.
More than 71,000 people enrolled by completing a 30 minute telephone interview. This made the Registry the largest effort in the U.S. to monitor the health of people exposed to a large-scale disaster.
The Registry was planned by the New York City Department of Health and Mental Hygiene and the federal Agency for Toxic Substances and Disease Registry (ATSDR). It has been funded by the National Institute of Occupational Safety and Health (NIOSH) since May 2009. It is housed in a dedicated research unit within the NYC Health Department's Division of of Epidemiology.
The Registry is supported with federal tax dollars. New York City has funded some specific Registry research projects, such as the respiratory study of Lower Manhattan residents and office workers exposed to the disaster. The Registry is hosted by the New York City Department of Health and Mental Hygiene.
During 2003 and 2004, enrollees completed a 30-minute telephone or in-person interview. They were asked a series of questions (PDF) about their physical and mental health, where they were on 9/11 and their level of exposure to dust, smoke, and debris.
The Wave 2 survey included many of the same questions as the initial interview and included new follow-up questions for specific groups in the Registry.
The Wave 3 survey added new questions on more common health conditions and symptoms. Questions were also added on medications and hospitalizations.
The Wave 4 survey, which was completed in 2015-2016, added new questions on mental health treatment and hospitalization. It also included , an asthma survey that was sent to enrollees who previously reported new asthma after 9/11.
The Wave 4 survey included the following themes:
Measuring and Maximizing Coverage in the World Trade Center Health Registry (PDF) offers additional information about eligibility and estimates of the complete population of people eligible to enroll.
No, many people from outside New York City were near the WTC site on 9/11, and were eligible to enroll. Volunteers from all over the country also came to the WTC site to help in the rescue and recovery effort in the days, weeks and months after 9/11
Enrollees reside in every state and in 15 countries.> U.S. map of all enrollees by state (PDF).
No, enrollees were not asked about immigration status. An enrollee did not have to be a U.S. citizen or resident. Participation was voluntary, and all information is kept strictly confidential.
Enrollment in the Registry closed in November 2004.
Enrollment was always intended to be time-limited. All enrollees completed the same Wave 1 survey within the same time period. This helps provide a consistent basis of comparison for the next 20 years or more.
No, the Registry does not provide health care or financial assistance.
Contact the Registry’s Treatment Referral Program at 888-982-7848 for information about 9/11-related health care.
Contact the Victim’s Compensation Fund at 855-885-1555 or vcf.gov for information about financial compensation related to 9/11.
You can find the Registry’s findings/publications on WTC Scientific Bibliography page.
Yes, all information is kept strictly confidential. The Registry will not share enrollees' identifying information without signed written permission. Read the Registry's Confidentiality and Privacy Statement.
The Registry is unique in several important ways. It includes many more people than other studies, so it will provide a more complete picture of the long-term health effects of 9/11. It also includes a diverse group of people exposed to the disaster, including residents and children. In addition, other studies focus on specific groups, such as recovery workers or pregnant women, and are mainly one-time interviews or health evaluations that do not follow people over a 20-year period.
The Registry will continue to monitor enrollees’ health by using follow-up interviews and matching to other health registries. For example, by matching Registry enrollees with cancer registries in the states where the greatest numbers of enrollees reside, the Registry may be able to detect whether increases in cancer cases occur.
Sign up for NYC 9/11 Health Update, a bimonthly enewsletter that highlights the latest 9/11 health news.
To receive a copy of the Registry's annual report, download it here (PDF) or to recieve it via U.S. mail please contact Registry staff:
By phone: 866-692-9827
By email: firstname.lastname@example.org
By fax: 347-396-2893
By mail: WTC Health Registry
New York City Department of Health and Mental Hygiene
42-09 28th Street, CN 6W
Queens, NY 11101-4132
You can update the Registry with your new health diagnosis by contacting the Registry at 866-692-9827.