Frequently Asked Questions (FAQ) - 9/11 Health

9/11 Health


WTC Health RegistryContact Us

Why the Registry Is Important
Who Is Enrolled
Frequently Asked Questions (FAQ)
Addressing the Health Impacts of 9-11
Collaborators
Historical Context

Why the Registry Is Important

Who Is Enrolled

Frequently Asked Questions (FAQ)

Addressing the Health Impacts of 9-11

Collaborators

Historical Context


Frequently Asked Questions (FAQs)

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.

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Who operates the Registry?

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.

How can I contact the Registry?

By phone: 866-692-9827

By email: wtchr@health.nyc.gov

By fax: 718-786-4006

By mail: WTC Health Registry

New York City Department of Health and Mental Hygiene

42-09 28th Street, CN 6W

Enrollees can update their contact information.

How is the Registry funded?

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.

What kinds of questions were asked during the survey interviews?

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:

Time course of PTSD, serious psychological distress, depression and anxiety

Time course of respiratory symptoms, asthma and other 9/11-related diagnosed physical conditions such as gastroesophageal reflux disease)

Unmet health care need, health care utilization, and treatment history

Quality of life and physical and mental functional limitations,

Cancer screening and cancer family history (new to Wave 4)

Mental health treatment (new to Wave 4)

Potential emerging conditions

Wave 2 Surveys

Adults (2006-2007) (PDF)

Adolescents (2007-2008) (PDF)
Parent/Adolescent (2007-2008) (PDF)

Children (2007-2008) (PDF)

Wave 3 Surveys:

Adult (2011-2012) (PDF)

Parent/Adolescent (2011-2012) (PDF)
Adolescent (2011) (PDF)

Wave 4 Surveys:

All Ages Core Survey (2015-2016) (PDF)

Asthma Survey (2015-2016) (PDF)

Wave 5 Surveys:

Adult (2020-2021) (PDF)

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Who was eligible?

Boundary Map

People who were in a building, on the street or on the subway south of Chambers Street on September 11, 2001.

People involved in rescue, recovery, clean up or other activities at the WTC site, the WTC Operations on Staten Island recovery operations or on the barges that carried debris between these sites, for at least one shift anytime between September 11, 2001 and June 30, 2002.

Students and staff enrolled in schools (pre K-12) or day care centers south of Canal Street on September 11, 2001.

People who were living south of Canal Street on September 11, 2001.

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.

Did I have to live in New York City?

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).

U.S. map of rescue & recovery workers by state (PDF)

Were enrollees asked about immigration status?

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.

When did enrollment end?

Enrollment in the Registry closed in November 2004.

Why did enrollment end?

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.

Does the Registry provide health care or financial assistance?

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. Contact the World Trade Center Health Program online or at 888-982-4748 for information about medical monitoring and treatment of WTC-related health conditions.

Where can I find the information on the Registry's findings/publications?

You can find the Registry’s findings/publications on WTC Scientific Bibliography page.

Is the information confidential?

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.

How is the Registry different from other studies?

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.

How can I receive the latest 9/11 health news?

Sign up for NYC 9/11 Health Update, a quarterly e-Newsletter that highlights the latest 9/11 health news and includes a year end Annual Report.

I am a researcher. How can I find out more?

To find more information and research opportunities visit Research.

I am enrolled in the Registry. How do I update my contact information?

Enrollees can update their contact info by logging into their account

Or contact Registry staff:

By phone: 866-692-9827

By email: wtchr@health.nyc.gov

By fax: 718-786-4006

By mail: WTC Health Registry

New York City Department of Health and Mental Hygiene

42-09 28th Street, CN 6W

I am enrolled in the Registry. How can I update the Registry about my new health diagnosis?

You can update the Registry with your new health diagnosis by contacting the Registry:

By phone: 866-692-9827

By email: wtchr@health.nyc.gov

By fax: 718-786-4006

By mail: WTC Health Registry

New York City Department of Health and Mental Hygiene

42-09 28th Street, CN 6W