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World Trade Center Health Registry

by Sue Wilson, Sep 10, 2003
 

The city's health department has announced plans for what could become the largest public-health investigation ever: a comprehensive survey to follow the health of those people most directly exposed to 9/11's World Trade Center collapse and the subsequent clean-up efforts.

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The launching of the World Trade Center Health Registry was announced at a September 5 press conference by the city's Health and Mental Hygiene Commissioner, Thomas R. Frieden, MD, and Dr. Henry Falk, Associate Administrator for the Agency for Toxic Substances and Disease Registry and the director of the federal Centers for Disease Control's National Center for Environmental Health.

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"The effects of 9/11 are still being felt today by all New Yorkers, and all Americans. Hundreds of thousands of people from all walks of life were in the vicinity of the twin towers when they collapsed, and were exposed to a combination of smoke, dust, and debris. We need to study the health of these people in order to understand the possible health consequences related to 9/11," said Dr. Frieden. "If you were there on 9/11, you are strongly encouraged to sign up for the WTC Health Registry."

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Dr. Falk said, "The World Trade Center Health Registry will do what no other health survey is doing. It will record and measure the health impact of 9/11 in the broadest possible terms. The Registry is a tool for giving us health data that could guide how we respond to this kind of disaster for generations to come. The more people enroll - even if they feel perfectly healthy - the better our chances will be of understanding any health effects from this tragic event."

People in any one or more of the following categories are eligible to enroll in the registry, regardless of whether they have experienced any health problems:

· People who were in a building, on the street, or on the subway south of Chambers Street on 9/11/01;
· Workers involved in the rescue attempts, recovery, or clean-up work at the World Trade Center site, and/or the associated recovery operations on Staten Island, at any time between 9/11/01 and 6/30/02;
· Students and staff at schools (pre-K to 12) or daycare centers south of Canal Street on 9/11/01; and
· People living south of Canal Street on 9/11/01.

If enough people enroll, city and federal health officials said, the registry could result in an investigation as much as five times the size of the one following the 1979 Three-Mile Island nuclear accident in Pennsylvania. That study tracked 38,000 people. Falk noted that the report based on the Three-Mile Island registry, which was issued last year and stated that people who lived near the nuclear plant showed no significant increase in cancer deaths, probably served to calm a population nervous about the unknown long-term health effects of the accident.

"I plan to enroll in the World Trade Center Health Registry, and I encourage all Battery Park City residents and workers who were here on 9/11 to step forward and enroll too," said Timothy S. Carey, CEO and president of the Battery Park City Authority, who was also present at the press conference.

To advertise the registry, which is being funded with $20 million in federal funds, the city health department says it will put posters in subways and commuter trains that read, "I was there September 11th." It will also use billboards, direct-mail solicitations, Internet ads, and brochures to urge people to step forward and enroll.

Officials stressed that all medical information collected from individuals will be kept strictly private and confidential, and that no medical examinations or tests will be required for participation. People can drop out of the registry at any time.

Those who enroll in the registry will be asked to answer a 30-minute telephone survey of where they were on 9/11, how long they were in areas afflicted by smoke and fumes, and whether they have had any health problems since. Registrants will be periodically contacted to report any health changes. This information will then be compared with that of the general population, in order to identify any health problems possibly linked to 9/11. Ultimately, findings drawn from the health registry should be able to allow researchers to observe patterns that may be invisible to individual physicians.

The announcement of the survey follows closely on recent revelations that the Environmental Protection Agency gave New Yorkers false assurances about air quality in the days after the terrorist attack. But city health officials say that the registry was not launched in response to the recent accusations. Plans for the registry were first announced last year. The health registry's goal is to follow up with hundreds of thousands of people who were directly exposed to the aftermath of the twin towers' collapse, which produced choking clouds of dust, asbestos, smoke, and fire. It will re-contact registrants periodically over the next 20 years to track any changes in their physical or mental health. People exposed to the WTC aftermath have already reported symptoms of asthma, persistent cough, burning eyes, and other ailments presumably caused by the airborne contaminants that so thickly pervaded the downtown area in the days following 9/11/2001.

Officials said the registry will issue quarterly reports to inform the public about what it learns from the project. The reports will be posted online www.wtcregistry.org. The first report is expected this fall.

The registry is a jointly funded effort of the New York City Department of Health and Mental Hygiene, the Agency for Toxic Substances and Disease Registry, and the Federal Emergency Management Agency (FEMA). RTI International, a nonprofit research firm, will conduct the interviews.

To find out more about the WTC Health Registry and the enrollment process, you can visit www.wtcregistry.org or call 311 or toll-free to 1-866-NYC-WTCR (1-866-692-9827).

Sue Wilson is a journalist who writes frequently on health and science topics for such outlets as the New York Times, WNET, and UNICEF.


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