More than 20 years of research involving 71,000 people exposed to the Sept. 11 attacks is revealing persistent effects ranging from PTSD and respiratory disease to cancer and cognitive impairment.
As the United States marks 25 years since the Sept. 11 terrorist attacks, New York City health officials are drawing attention to another timeline: more than two decades spent tracking the physical and psychological consequences for the people who were there.
The World Trade Center Health Registry, established in 2002, now follows approximately 71,000 people exposed to the attacks and their aftermath, making it the largest post-disaster health registry in U.S. history and one of the longest-running registries of its kind in the world, according to a Sept. 10 release from the New York City Health Department.
Participants include rescue and recovery workers, Lower Manhattan residents and employees, children, and others exposed to the dust, debris, smoke, and psychological trauma surrounding the destruction of the World Trade Center.
Over the years, their health information has helped researchers document illnesses associated with 9/11 exposure, including asthma and other respiratory diseases, gastroesophageal reflux disease, cancer, post-traumatic stress disorder and depression. More recent research is examining conditions including autoimmune diseases, hearing problems and cognitive impairment.
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“The World Trade Center Health Registry has been essential to understanding the long-term health impacts of September 11 and ensuring that those who were exposed continue to be seen, heard, supported, and never forgotten,” said NYC Health Commissioner Dr. Alister F. Martin. “By tracking health outcomes for over two decades, the Registry provides critical information that helps us identify emerging health concerns, guide prevention and treatment efforts, and better understand the lasting effects of large-scale disasters. Their work is a powerful reminder that preparedness also is ongoing and means having the systems in place to protect and monitor the health of communities for years to come.”
Health effects persisting decades later
Some of the Registry’s clearest findings involve the psychological toll of the attacks.
Nearly 20 percent of adults exposed to 9/11 have experienced symptoms of PTSD, roughly four times the rate reported among the general population, according to the Health Department. For some survivors and responders, those symptoms have persisted for more than two decades.
Children exposed directly to the attacks have also shown long-term effects. According to the Registry, those who experienced 9/11 as children were twice as likely to develop asthma as the general New York State population and were also more likely to experience depression. The children enrolled in the Registry are now adults, allowing researchers to study how childhood exposure to a major disaster may affect health decades later.
Researchers have continued to follow illnesses associated with exposure to the enormous dust cloud produced by the collapse of the World Trade Center towers, as well as dust that later settled or was stirred up in buildings and neighborhoods.
Conditions being tracked include asthma, chronic obstructive pulmonary disease, pulmonary fibrosis, sarcoidosis, cardiovascular disease, autoimmune disorders, cancer and hearing loss.
Researchers are also increasingly studying potential effects on the brain.
Multiple studies have linked exposure to the 9/11 dust cloud with cognitive impairment, while Registry research found that more than one in five enrollees reported confusion or memory loss, according to the Health Department.
Not every long-term effect has been negative. Around one-third of Registry participants reported moderate to high levels of post-traumatic growth — psychological changes following trauma that can include a greater appreciation of life, stronger relationships, increased personal strength and a deeper sense of meaning.
Lessons extending beyond 9/11
The Registry was created through a partnership between the NYC Health Department and the federal Agency for Toxic Substances and Disease Registry. Since 2009, it has received funding through the Centers for Disease Control and Prevention’s National Institute for Occupational Safety and Health.
Its findings have helped shape treatment and monitoring programs for people affected by 9/11 while also contributing to broader disaster-response planning.
The Health Department said research from the Registry has informed approaches used in later public health emergencies, including COVID-19 and air-quality emergencies such as the toxic smoke produced by the Maui wildfires.
The Registry also refers eligible participants to the federal World Trade Center Health Program, which provides medical monitoring and treatment for people affected by the attacks. Registry research suggests participation in the program may reduce mortality risk among 9/11 responders after researchers account for underlying medical conditions.
A quarter-century after the attacks, the work is continuing.
Researchers plan to focus increasingly on aging and cognition, emergency preparedness, the effects of experiencing multiple disasters, and the long-term health of people who experienced Sept. 11 as children.
The goal is not only to understand what happened to those exposed to 9/11, but to apply those lessons when future disasters leave health effects that may not become fully apparent until years — or decades — later.
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