FAQs

What is the World Trade Center Health Registry?

The WTC Health Registry is a comprehensive and confidential health survey of those most directly exposed to the events of 9/11/01. Those who enrolled answered a 30-minute telephone survey about where they were on 9/11/01 and were asked to report the status of their health. This will allow health professionals to compare the health of those most exposed to the events of 9/11/01 with the health of the general population.

We hope to follow up with people periodically over the next 20 years to track any changes in their physical or mental health. There were no blood tests or medical exams required to enroll.

Why is the WTC Health Registry important?

Health registries have been set up following a number of disasters, including the Oklahoma City bombing of 1995. They are valuable tools that allow health professionals to track and investigate possible trends in illness and recovery, and help create guidelines that can save lives and reduce injuries in future disaster settings. This is why it was critically important that people who worked, lived, or were near the WTC site on 9/11/01, and the months that followed, enroll in the WTC Health Registry.

By enrolling in the WTC Health Registry, enrollees:

Made a valuable contribution to understanding the full scope of the health effects related to 9/11.

Through the information provided, enrollees helped to create guidelines that can save lives and reduce injuries in future disaster settings.

Received information about other health studies and programs related to 9/11/01.

Quarterly reports with updated findings from the WTC Health Registry will be available on this Web site. Check back for regular updates.

What types of questions were asked during the interview?

The WTC Health Registry interviewer asked enrollees a series of questions about where they were on 9/11/01, and their level of exposure to dust, smoke, and debris. Some questions included:

• Where were you on 9/11/01?
• How long were you in areas with dust, smoke, and fumes?
• Have you had any health problems since 9/11/01?
• Have you experienced/felt more anxiety or sadness since 9/11/01?
• How can we contact you for follow-up and to share information?
• Did I need to be a New York City resident to enroll?

No. Many people from outside New York City were near the WTC site on 9/11/01. Thousands commuted to or visited New York City from the greater metropolitan area, including:

• New Jersey
• Long Island
• Upstate New York
• Connecticut
• Pennsylvania

Volunteers from all over the country also came to the WTC site to help in the rescue and recovery effort.

Is the information given confidential?

Yes. All information provided will be kept confidential. The WTC Health Registry will not share enrollees' identifying information with others.

How is the WTC Health Registry different from other studies?

The WTC Health 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 9/11/01. Additionally, other studies being conducted focus on specific groups, such as recovery workers or pregnant women. These studies are mainly one-time interviews or health evaluations and will not follow people over a 20-year period.

The WTC Health registry, however, will continue to monitor the health of the participants over time using follow-up interviews and matching to other health registries, so that more can be learned about the long-term effects of exposure earlier that would otherwise be possible.

Were enrollees asked their immigration status?

No. Those enrolled in the WTC Health Registry were not asked about their immigration status. One did not need to be a U.S. citizen or U.S. resident to enroll. Participation in the WTC Health Registry was voluntary, and all information will remain strictly confidential.

How can I sign up to get Quarterly Reports e-mailed to me?

Whether or not you enrolled in the WTC Health Registry, you may sign up to receive regular e-mail updates of our ongoing analysis of the registry.

Simply go to http://www.nyc.gov/health/email to sign-up for WTC Health Registry information, as well as other regular health updates that may interest you.

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

Please call the project coordinator at 212-442-1585.

I enrolled in the WTC Health Registry. How do I update my information?

To report a change of address, telephone, or e-mail address, visit the Update Your Contact Information page.

The Registry will contact registrants periodically to track changes in their physical or mental health. Participants should provide updates on their health at that time.