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  Why the Registry is Important
  Who Is Enrolled
  WTC Health Registry Partners
  Frequently Asked Questions (FAQs)
 
  By the NYC Health Commissioner
     
  9/11-Affected People
  Healthcare Professionals
  Researchers
     



 

Click here to update your contact information. 



About the Registry

Frequently Asked Questions (FAQs)

What is the WTC Health Registry?

Who operates the Registry?

How can I contact the Registry?

How is the Registry funded?

What kinds of questions were asked during the survey interviews?

Who was eligible?

Did I have to live in New York City?

Were enrollees asked about immigration status?

Why did enrollment end?

Is the information confidential?

How is the Registry different from other studies?

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

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

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

What is the WTC Health Registry?

The Registry was developed  to document and evaluate the long-term physical and mental health effects of  9/11.  Enrollment was open from September 2003 through November 2004.

More than 71,000 people enrolled by completing a 20 to 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.

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 Health Department's Department of Epidemiology.

How can I contact the Registry?

By phone: 866-692-9827
By email: wtchr@health.nyc.gov
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

Enrollees can update their contact information here.

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.

What kinds of questions were asked during the survey interviews?

During 2003 and 2004, enrollees completed a 30-minute telephone interview. They were asked a series of questions PDF Document (Reader Required; Click to Download) 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, which is being conducted now, added new questions on more common health conditions and symptoms. Questions were also added on medications and hospitalizations related to health conditions.

Wave 2 Surveys:

Adults (2006-2007) PDF Document (Reader Required; Click to Download)
Adolescents (2007-2008) PDF Document (Reader Required; Click to Download)
Parent/Adolescent (2007-2008) PDF Document (Reader Required; Click to Download)
Children (2007-2008) PDF Document (Reader Required; Click to Download)

Wave 3 Surveys:

Adult (2011-2012) PDF Document (Reader Required; Click to Download)
Parent/Adolescent (2011-2012) PDF Document (Reader Required; Click to Download)
Adolescent (2011) PDF Document (Reader Required; Click to Download)

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 Document (Reader Required; Click to Download) 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.  

Enrollees reside in every state and in 15 countries.

> U.S. map of all enrollees by state PDF Document (Reader Required; Click to Download).
> U.S. map of rescue & recovery workers by state PDF Document (Reader Required; Click to Download)

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.

Why did enrollment end?

Enrollment was always intended to be time-limited.  All enrollees completed the same survey within the same time period. This helps provide a consistent basis of comparison for the next 20 years.

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 occurred.


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

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 herePDF Document (Reader Required; Click to Download) or to recieve it via U.S. mail please contact Registry staff:

By phone: 866-692-9827
By email: wtchr@health.nyc.gov
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

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

Check our Resources for Researchers.

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

Update your contact info here.

Or contact Registry staff:

By phone: 866-692-9827
By email: wtchr@health.nyc.gov
By fax: 212-788-4127
By mail: The WTC Health Registry
New York City Department of Health and Mental Hygiene
233 Broadway, 26th floor, CN 6W
New York, NY 10279-2600

 


 
 

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