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Firefighters Quarterly Magazine
Winter 2006 Issue >> Contents >> Standing Watch: The WTC Health Registry Project
Standing Watch: The WTC Health Registry Project
By Phill Powell
It only makes sense that the worst mainland attack ever waged against the United States should prompt the largest recovery operation in our nation's history. That's precisely what played out four years ago in Lower Manhattan, at the former site of the World Trade Center complex.
At 9:59 a.m., September 11, 2001, (when the South Tower crumbled upon itself), the recovery effort began in earnest, although there was still a major rescue operation taking place in the still-standing North Tower.
Between Sept. 11, 2001, and May 2002, first responders of all types (with generous help from departments around the country) descended on the hallowed earth known as Ground Zero, working to clear steel, concrete and other materials from the general area that housed the various structures that comprised the WTC.
During the recovery effort, approximately 10 tons of debris was being processed daily at the Staten Island landfill facility. All of it would be laboriously screened and sifted by hand, in hopes of reclaiming personal effects or materials that could be used as evidence by those investigating the attacks. The city estimated that the total amount of debris removed from the WTC site would exceed 1.5 million tons.
When the tedious and painstaking work of clearing the WTC site was accomplished, under budget and ahead of schedule, it led New York State Emergency Management Office Director Edward Jacoby to remark that, "New York City has done an exceptionally good job in managing an extremely difficult task-the removal of more than a million tons of debris-with great dignity and concern for emergency workers, the victims and their families."
On May 30, 2002, thousands of onlookers watched as the final piece of the last steel column retrieved from the Twin Towers was carried out of the site, along with an empty stretcher draped with an American flag. This represented all of the fallen whose remains could not be located, despite months of backbreaking efforts and 24-hour shift operation at the site.
Two months later, in July 2002, the rest of the recovery operation-the painfully slow sifting of debris taking place at the Staten Island Fresh Kills landfill-was called to a halt. As far as the first responders were involved, the job was over.
THE PROBLEM
In March 2002, six months after the attack that
devastated Lower Manhattan, the debris removal
effort was running ahead of schedule and under
budget.
It had been a monumental task, and the various first responders who answered this call to duty performed it admirably, with unquestionable devotion and tireless determination.
But it wasn't easy work-nor was it safe. In addition to the various hazards that lay in the twisted steel and glass shards of Ground Zero, there was the issue of the air quality of the site. Where once had stood the world's tallest buildings, there had sprung up a world of dust and ash, so much of it that early photos taken immediately after the tower collapses almost resemble moonscapes, because there is so much white dust everywhere.
There was so much dust present on-scene that it became nearly impossible not to breathe it, even when trying to follow the proscribed rules about wearing respirators in such conditions. The dust bothered many-irritating their eyes and burning their throats. There had been all types of fires on 9/11, with many kinds of fuel sources. Who knew what kind of particulates were in that dust, anyway?
By October 29, for example, it was reported that approximately 40 percent of the 11,000 firefighters working in the initial recovery effort were still coughing so much that they were under a doctor's care. Dubbed "World Trade Center Syndrome" and centered primarily on respiratory problems, the problem was serious enough that some 4,000 firefighters were taking prescribed steroid inhalants for their condition. Those affected reported constant coughing, lung trauma, sinus infections and some even complained of asthma-related symptoms that necessitated mechanical respiration.
The troubling situation led many in the public health community to wonder about the possible long-term effects of exposure to conditions like those found at Ground Zero. There were many groups of people at the site; there needed to be one major study that could register and track as many of those present as possible. The need existed for a health registry devoted to the Ground Zero recovery effort. On Sept. 5, 2003, the World Trade Center Health Registry began operation.
THE PROJECT
The WTC Health Registry project isn't the first health registry to have been organized-one was created after the 1995 Oklahoma City bombing, for example-but it's probably the largest that's taken place to date.
"More than 70,000 people have enrolled in the World Trade Center Health Registry, and it is by far the most comprehensive project of its kind," reported Dr. Thomas R. Frieden, Commissioner of the Department of Health and Mental Hygiene (DOHMH) in 2004. The DOHMH administers the running of the WTC Health Registry along with the federal Agency for Toxic Substances and Disease Registry (ATSDR), with funding provided by the Federal Emergency Management Agency (FEMA).
Health registries perform several valuable functions that can allow health professionals to see possible health patterns in groups of people. Because of the vast amounts of information that they story, health registries are equally useful for studying the past, dealing with the present and predicting the future.
Specifically, health registries can help their participants by answering questions that those in the affected group might wish to ask. Furthermore, health registries can relay breaking information to its roster of participants, acting in a news-delivery capacity. Also, registries promote the cause of research and give scientists more informational tools.
As you might imagine, just as the WTC recovery effort was massive, so has been the process of trying to gather and organize the relevant data needed to establish the WTC Health Registry. One agency or group simply couldn't do it all alone, and luckily, that's not the case here, either. The institutions and facilities involved with the WTCHR project represent some of the most respected and trusted in all of medicine:
- U.S. Centers for Disease Control and Prevention (CDC)
- Columbia University
- John Hopkins Bloomberg School of Public Health
- Mount Sinai Medical Center
- New York University
- New York School System
- New Jersey Dept. of Health
- Hunter College
- and last, but certainly not least, The Fire Dept. of New York (FDNY)
THE SUBJECTS
As for the subjects of all this data-collection, those actually exposed to the Ground Zero environment, there were four main groups of people to study. The first group consists of those who were in a building, on the street, or on the subway south of Chambers Street on 9/11/01. (62% of the Registry's enrollees fall into this group.)
The second group is made up of the various people involved in the rescue, recovery, clean-up, or any other activities at the WTC site-or the WTC Recovery Operations Center on Staten Island-at any time during the period between 9/11/01 and 6/30/02. (42% of enrollees)
The third group (3-4% of enrollees) included students and staff enrolled in schools or day-care centers south of Canal Street.
Finally, the fourth group of study focused on individuals living south of Canal Street on 9/11/01. (21% of enrollees)
One important consideration involved the fact that New York is one of the world's most traveled cities in the world, with an ongoing ever-changing population of American and foreign tourists. It was determined that the WTCHR would need to include data from these visitors, as well as from rescue and recovery workers from out of state, who volunteered to help in the aftermath of 9/11.
That same "transient" problem also poses a challenge for this research project. Just as New York visitors come and go all the time, so do (to a less frequent extent) full-time New Yorkers, who often move away for retirement or other work opportunities. Therefore, one ever-present goal of the project had to involve making sure that every possible effort is made to keep track of program participants, no matter where they roam. That's a fairly tall order, especially given the huge number of people that took part in the WTCHR surveys, and that the goal of the program is to track their health indicators for a full 20 years.
THE INTERVIEW
The doctors and scientists who designed the WTC Health Registry interview tried to make it as quick and painless as possible, so as not to alienate possible participants who wouldn't want to commit to a lengthy process. No blood tests are medical exams are required of participants. In fact, the entire process takes only 30 minutes, during which time the participant takes part in a telephone survey about where exactly they were within the affected areas, as well as what after-effects they've seen in their health, if any.
Some typical interview questions: - 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?
By September 10, 2004, the WTCHR staff had recorded nearly 62,000 interviews, more than 3,200 of them with members of the FDNY. But the work was just starting.
"The formal enrollment phase of the Registry has ended, and we can now begin further investigations," stated Dr. Henry Falk, Director of the Agency for Toxic Substances and Disease Registry. Even though his remarks were made in Nov. 2004, at the conclusion of the interview process, he clearly suggested that while many mountains of data have been moved so far, in many ways the project is only now beginning to ramp up.
And then there are the follow-up surveys. The WTCHR plans to have its first follow-up survey prepared and distributed to all participants sometime in early 2006. The goal of the WTCHR is to keep in touch with participants, at two to three year intervals.
THE FINDINGS
Just a few blocks from Ground Zero, two 500-ton
floating cranes placed WTC wreckage into barges,
which was then towed from Pier 25 to a Staten
Island landfill.
In Nov. 2004, after completing interviews with more than 70,000 participants, the WTCHR released a number of key findings based on its surveys. The basic fact was that many enrollees reported experiencing some types of problems in the weeks and months following 9/11.
"We now know that tens of thousands of Registry enrollees reported significant respiratory and mental health symptoms," announced the DOHMH's Dr. Frieden. "Whether these symptoms persist at present-and for how long they will persist-will require further investigation, and much more needs to be done before definitive conclusions can be drawn."
The range of physical symptoms mentioned by participants indicates that most conditions were more annoying and bothersome than life-threatening or painful. For example, four of the symptoms listed also suggest allergic rhinitis, commonly known as hay fever: 1. sinus problems; nasal or post-nasal irritation (47% of participants reported this)
2. shortness of breath (42%)
3. wheezing (39%)
4. throat irritation (38%)
5. persistent cough (37%)
6. eye irritation (30%)
7. heartburn, indigestion, reflux (25%)
8. severe headaches (17%)
9. skin rash or irritation (13%)
10. hearing problem or hearing loss (10%)
While the mentioned physical symptoms are obviously important to study,
researchers are also keeping tabs on the psychological factors at work on the Registry's participants. After all, the first responders who took part in the grueling Ground Zero recovery effort were doing so under some of the toughest psychological pressures known to man-including carrying out dangerous recovery operations in what had essentially become a battle-zone environment, not to mention having to cope with the sudden and violent deaths of many fallen comrades.
It's not particularly surprising, then, to learn that around eight percent of the participants did suffer from some type of "serious psychological distress" within one month of the time at which they were interviewed. (This is noticeably higher than the citywide average, around 5%.)
A couple of other notable findings were also revealed. For example, nearly half (48%) of all participants who were below Chambers Street on 9/11 reported suffering some type of injury-most commonly involving irritation to the eyes.
THE NEED
The WTCHR program (now with nearly 72,000 participants) is one that the FDNY's top leadership has endorsed fully, understanding the long-term value of the health data the project strives to gather. It's one program that needs and deserves the on-going support of those it seeks to study.
"The World Trade Center Health Registry is a powerful tool in helping the City's health professionals identify and respond to any long-term health issues related to 9/11/01," said FDNY Fire Commissioner Nicholas Scoppetta. "In addition to the monitoring performed by the FDNY's own health professionals, we encouraged our membership to enroll and become part of this important program. Monitoring long-term health effects is the key to ensuring that we fully understand the health consequences for all who were impacted by the events of that day."
And all the days after. FQ
Top Photo by Andrea Booher/ FEMA News Photo
Other photos by Photo by Larry Lerner/ FEMA News Photo
THE LINKS
The WTC Health Registry not only has tons of information to offer, it can also link you up to other powerful sources of data. Start with its own Web site (www. wtcregistry.org), but here are some others that can also be useful:
- 2004 Findings: NYC Dept. of Health and Mental Hygiene (DOHMH)
- Data Snapshot: Understanding the Health Impact of 9/11
- The World Trade Center Resident' Respiratory Health Study: New Onset Respiratory Symptoms and Pulmonary Function
- Health and Environmental Consequences of the World Trade Center Disaster
MOVING?
The WTC Health Registry only works if it's able to stay in touch with the program's participants. Do your part by keeping the WTCHR informed about your current contact information. Updating your info couldn't be easier:
WEB: Visit the WTCHR site at http://www.wtcregistry.org and use the "Update Contact Info" link.
EMAIL: Send a message directly to wtchr@health.nyc.gov
PHONE: (212) 442-1585
MAIL:
The World Trade Center Health Registry
NYC Dept. of Health & Mental Hygiene
125 Worth Street, CN-6
New York, NY 10013
Winter 2006 Issue >> Contents >> Standing Watch: The WTC Health Registry Project
Standing Watch: The WTC Health Registry Project
By Phill Powell
It only makes sense that the worst mainland attack ever waged against the United States should prompt the largest recovery operation in our nation's history. That's precisely what played out four years ago in Lower Manhattan, at the former site of the World Trade Center complex.
At 9:59 a.m., September 11, 2001, (when the South Tower crumbled upon itself), the recovery effort began in earnest, although there was still a major rescue operation taking place in the still-standing North Tower.
Between Sept. 11, 2001, and May 2002, first responders of all types (with generous help from departments around the country) descended on the hallowed earth known as Ground Zero, working to clear steel, concrete and other materials from the general area that housed the various structures that comprised the WTC.
During the recovery effort, approximately 10 tons of debris was being processed daily at the Staten Island landfill facility. All of it would be laboriously screened and sifted by hand, in hopes of reclaiming personal effects or materials that could be used as evidence by those investigating the attacks. The city estimated that the total amount of debris removed from the WTC site would exceed 1.5 million tons.
When the tedious and painstaking work of clearing the WTC site was accomplished, under budget and ahead of schedule, it led New York State Emergency Management Office Director Edward Jacoby to remark that, "New York City has done an exceptionally good job in managing an extremely difficult task-the removal of more than a million tons of debris-with great dignity and concern for emergency workers, the victims and their families."
On May 30, 2002, thousands of onlookers watched as the final piece of the last steel column retrieved from the Twin Towers was carried out of the site, along with an empty stretcher draped with an American flag. This represented all of the fallen whose remains could not be located, despite months of backbreaking efforts and 24-hour shift operation at the site.
Two months later, in July 2002, the rest of the recovery operation-the painfully slow sifting of debris taking place at the Staten Island Fresh Kills landfill-was called to a halt. As far as the first responders were involved, the job was over.
THE PROBLEM
In March 2002, six months after the attack that
devastated Lower Manhattan, the debris removal
effort was running ahead of schedule and under
budget.
But it wasn't easy work-nor was it safe. In addition to the various hazards that lay in the twisted steel and glass shards of Ground Zero, there was the issue of the air quality of the site. Where once had stood the world's tallest buildings, there had sprung up a world of dust and ash, so much of it that early photos taken immediately after the tower collapses almost resemble moonscapes, because there is so much white dust everywhere.
There was so much dust present on-scene that it became nearly impossible not to breathe it, even when trying to follow the proscribed rules about wearing respirators in such conditions. The dust bothered many-irritating their eyes and burning their throats. There had been all types of fires on 9/11, with many kinds of fuel sources. Who knew what kind of particulates were in that dust, anyway?
By October 29, for example, it was reported that approximately 40 percent of the 11,000 firefighters working in the initial recovery effort were still coughing so much that they were under a doctor's care. Dubbed "World Trade Center Syndrome" and centered primarily on respiratory problems, the problem was serious enough that some 4,000 firefighters were taking prescribed steroid inhalants for their condition. Those affected reported constant coughing, lung trauma, sinus infections and some even complained of asthma-related symptoms that necessitated mechanical respiration.
The troubling situation led many in the public health community to wonder about the possible long-term effects of exposure to conditions like those found at Ground Zero. There were many groups of people at the site; there needed to be one major study that could register and track as many of those present as possible. The need existed for a health registry devoted to the Ground Zero recovery effort. On Sept. 5, 2003, the World Trade Center Health Registry began operation.
THE PROJECT
The WTC Health Registry project isn't the first health registry to have been organized-one was created after the 1995 Oklahoma City bombing, for example-but it's probably the largest that's taken place to date.
"More than 70,000 people have enrolled in the World Trade Center Health Registry, and it is by far the most comprehensive project of its kind," reported Dr. Thomas R. Frieden, Commissioner of the Department of Health and Mental Hygiene (DOHMH) in 2004. The DOHMH administers the running of the WTC Health Registry along with the federal Agency for Toxic Substances and Disease Registry (ATSDR), with funding provided by the Federal Emergency Management Agency (FEMA).
Health registries perform several valuable functions that can allow health professionals to see possible health patterns in groups of people. Because of the vast amounts of information that they story, health registries are equally useful for studying the past, dealing with the present and predicting the future.
Specifically, health registries can help their participants by answering questions that those in the affected group might wish to ask. Furthermore, health registries can relay breaking information to its roster of participants, acting in a news-delivery capacity. Also, registries promote the cause of research and give scientists more informational tools.
As you might imagine, just as the WTC recovery effort was massive, so has been the process of trying to gather and organize the relevant data needed to establish the WTC Health Registry. One agency or group simply couldn't do it all alone, and luckily, that's not the case here, either. The institutions and facilities involved with the WTCHR project represent some of the most respected and trusted in all of medicine:
- U.S. Centers for Disease Control and Prevention (CDC)
- Columbia University
- John Hopkins Bloomberg School of Public Health
- Mount Sinai Medical Center
- New York University
- New York School System
- New Jersey Dept. of Health
- Hunter College
- and last, but certainly not least, The Fire Dept. of New York (FDNY)
THE SUBJECTS
As for the subjects of all this data-collection, those actually exposed to the Ground Zero environment, there were four main groups of people to study. The first group consists of those who were in a building, on the street, or on the subway south of Chambers Street on 9/11/01. (62% of the Registry's enrollees fall into this group.)
The second group is made up of the various people involved in the rescue, recovery, clean-up, or any other activities at the WTC site-or the WTC Recovery Operations Center on Staten Island-at any time during the period between 9/11/01 and 6/30/02. (42% of enrollees)
The third group (3-4% of enrollees) included students and staff enrolled in schools or day-care centers south of Canal Street.
Finally, the fourth group of study focused on individuals living south of Canal Street on 9/11/01. (21% of enrollees)
One important consideration involved the fact that New York is one of the world's most traveled cities in the world, with an ongoing ever-changing population of American and foreign tourists. It was determined that the WTCHR would need to include data from these visitors, as well as from rescue and recovery workers from out of state, who volunteered to help in the aftermath of 9/11.
That same "transient" problem also poses a challenge for this research project. Just as New York visitors come and go all the time, so do (to a less frequent extent) full-time New Yorkers, who often move away for retirement or other work opportunities. Therefore, one ever-present goal of the project had to involve making sure that every possible effort is made to keep track of program participants, no matter where they roam. That's a fairly tall order, especially given the huge number of people that took part in the WTCHR surveys, and that the goal of the program is to track their health indicators for a full 20 years.
The doctors and scientists who designed the WTC Health Registry interview tried to make it as quick and painless as possible, so as not to alienate possible participants who wouldn't want to commit to a lengthy process. No blood tests are medical exams are required of participants. In fact, the entire process takes only 30 minutes, during which time the participant takes part in a telephone survey about where exactly they were within the affected areas, as well as what after-effects they've seen in their health, if any.
Some typical interview questions: - 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?
By September 10, 2004, the WTCHR staff had recorded nearly 62,000 interviews, more than 3,200 of them with members of the FDNY. But the work was just starting.
"The formal enrollment phase of the Registry has ended, and we can now begin further investigations," stated Dr. Henry Falk, Director of the Agency for Toxic Substances and Disease Registry. Even though his remarks were made in Nov. 2004, at the conclusion of the interview process, he clearly suggested that while many mountains of data have been moved so far, in many ways the project is only now beginning to ramp up.
And then there are the follow-up surveys. The WTCHR plans to have its first follow-up survey prepared and distributed to all participants sometime in early 2006. The goal of the WTCHR is to keep in touch with participants, at two to three year intervals.
THE FINDINGS
Just a few blocks from Ground Zero, two 500-ton
floating cranes placed WTC wreckage into barges,
which was then towed from Pier 25 to a Staten
Island landfill.
"We now know that tens of thousands of Registry enrollees reported significant respiratory and mental health symptoms," announced the DOHMH's Dr. Frieden. "Whether these symptoms persist at present-and for how long they will persist-will require further investigation, and much more needs to be done before definitive conclusions can be drawn."
The range of physical symptoms mentioned by participants indicates that most conditions were more annoying and bothersome than life-threatening or painful. For example, four of the symptoms listed also suggest allergic rhinitis, commonly known as hay fever: 1. sinus problems; nasal or post-nasal irritation (47% of participants reported this)
2. shortness of breath (42%)
3. wheezing (39%)
4. throat irritation (38%)
5. persistent cough (37%)
6. eye irritation (30%)
7. heartburn, indigestion, reflux (25%)
8. severe headaches (17%)
9. skin rash or irritation (13%)
10. hearing problem or hearing loss (10%)
While the mentioned physical symptoms are obviously important to study,
researchers are also keeping tabs on the psychological factors at work on the Registry's participants. After all, the first responders who took part in the grueling Ground Zero recovery effort were doing so under some of the toughest psychological pressures known to man-including carrying out dangerous recovery operations in what had essentially become a battle-zone environment, not to mention having to cope with the sudden and violent deaths of many fallen comrades.
It's not particularly surprising, then, to learn that around eight percent of the participants did suffer from some type of "serious psychological distress" within one month of the time at which they were interviewed. (This is noticeably higher than the citywide average, around 5%.)
A couple of other notable findings were also revealed. For example, nearly half (48%) of all participants who were below Chambers Street on 9/11 reported suffering some type of injury-most commonly involving irritation to the eyes.
THE NEED
The WTCHR program (now with nearly 72,000 participants) is one that the FDNY's top leadership has endorsed fully, understanding the long-term value of the health data the project strives to gather. It's one program that needs and deserves the on-going support of those it seeks to study.
"The World Trade Center Health Registry is a powerful tool in helping the City's health professionals identify and respond to any long-term health issues related to 9/11/01," said FDNY Fire Commissioner Nicholas Scoppetta. "In addition to the monitoring performed by the FDNY's own health professionals, we encouraged our membership to enroll and become part of this important program. Monitoring long-term health effects is the key to ensuring that we fully understand the health consequences for all who were impacted by the events of that day."
And all the days after. FQ
Top Photo by Andrea Booher/ FEMA News Photo
Other photos by Photo by Larry Lerner/ FEMA News Photo
The WTC Health Registry not only has tons of information to offer, it can also link you up to other powerful sources of data. Start with its own Web site (www. wtcregistry.org), but here are some others that can also be useful:
- 2004 Findings: NYC Dept. of Health and Mental Hygiene (DOHMH)
- Data Snapshot: Understanding the Health Impact of 9/11
- The World Trade Center Resident' Respiratory Health Study: New Onset Respiratory Symptoms and Pulmonary Function
- Health and Environmental Consequences of the World Trade Center Disaster
The WTC Health Registry only works if it's able to stay in touch with the program's participants. Do your part by keeping the WTCHR informed about your current contact information. Updating your info couldn't be easier:
WEB: Visit the WTCHR site at http://www.wtcregistry.org and use the "Update Contact Info" link.
EMAIL: Send a message directly to wtchr@health.nyc.gov
PHONE: (212) 442-1585
MAIL:
The World Trade Center Health Registry
NYC Dept. of Health & Mental Hygiene
125 Worth Street, CN-6
New York, NY 10013
BRAVEST AWARDS DINNER Our annual Bravest Awards Dinner honors New York City Firemen who go above and beyond the call of duty. • Learn more about the event • Watch Videos from past dinners |
|
A YEAR OF 9/11 MESSAGES On September 12, 2001, we launched a feature on this site where visitors could post a message for New York’s Bravest. In the year that followed we recieved more than 2000 messages (many of which were printed in a special issue of Firefighters Quarterly Magazine). We still have them here on the site, as a memorial and a reminder. • 9/11 Message Center |
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This is not an official City of New York or FDNY website. All information shall not be considered that given by the New York City Fire Department or FDNY. The FDNY acronym and the FDNY Shield Design are federal registered trademarks owned by the City of New York and are used herein with permission. |