NYT: Study to Follow 200,000 Exposed to Trade Center Ash

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January 3, 2003

Study to Follow 200,000 Exposed to Trade Center Ash

By KIRK JOHNSON

ew York City and federal health officials are working out the final details of what they say would be the largest study of its kind ever undertaken — a far-reaching health registry to follow as many as 200,000 people exposed to ash and dust from the destruction of the World Trade Center.

The $20 million registry, paid for by federal disaster relief money, is intended for residents and employees in Lower Manhattan, rescue and recovery workers, people who were evacuated from their homes after the disaster or anyone else who simply happened to be in Lower Manhattan on the morning of Sept. 11.

The primary goal is not so much to obtain treatment for people who might still be sick more than a year after the attack, health officials say, but rather to interview people to get a broader picture of who was affected and to look for patterns in illness and recovery that individual physicians and clinics might have missed. The power, registry planners say, will be in the numbers.

"We will have enough people enrolled to evaluate whether there are long-term pulmonary effects associated with exposure," said Dr. Polly , the assistant commissioner at the bureau of surveillance at the city's Department of Health and Mental Hygiene. "If there is an associated increase in asthma, heart attacks or post-traumatic stress, you need large numbers of people in different categories to see it."

But even some of the project's supporters, including Senator Hillary Rodham Clinton, who has pushed for long-term health monitoring, say that the extensive delays in beginning the registry, which was first discussed last summer and which may still not be up and running until the spring, have sharply escalated the project's difficulty. "People move away," Senator Clinton said. "How are we going to track down these people after so much time?"

Other health experts say that tricks of memory itself could also come into play — especially with a traumatic event like the trade center attack, which for tens of thousands of people produced effects from sore throats and coughs to sleepless nights.

Registry officials concede that time has taken a toll.

"The longer we wait, the longer it takes and the harder it gets," said Sharon Campolucci, the deputy director at the division of health studies at the federal Agency for Toxic Substances and Disease Registry, which is designing the study with the city.

Ms. Campolucci said the design of the registry has been complicated by thorny issues of statistics and public health analysis, and by its size.

Because the registry will be divided into groups of people who had sharply different levels of exposure, from downtown shoppers who breathed in the ash for a day to volunteers who labored at ground zero for weeks, designers must assemble lists of who might be included in each group, how many people might be needed to draw valid scientific conclusions, and the different questions that the people in each group will be asked.

The biggest federal registry previously designed by her agency, Ms. Campolucci said, had 12,000 people. The Mount Sinai School of Medicine is leading one of the largest medical investigations of the disaster, with up to 9,000 people being examined by doctors.

Dr. said another complication in putting together the registry was deciding who would be eligible to participate. Millions of people were exposed to the dust and ash to one degree or another, she said, but the goal was to reduce the list to about 500,000 people. Of that number, the planners hope to enroll 200,000 in the study. The study's organizers are obtaining lists of people who lived, worked or went to school in the area. People who wish to participate but who are not sure if they are identified on any list will be able to volunteer if they qualify.

And while some of the parameters are still being considered, Dr. said, for now the registry is restricted to people who were living or working in Lower Manhattan on Sept. 11, or who worked or volunteered at ground zero, or at the Fresh Kills landfill in Staten Island, where much of the debris and remains were examined. The interviews, most of which will be done by telephone, are expected to begin in late spring.

Another major issue still to be resolved is all about money. The $20 million committed to the registry will pay only for its initial creation and the first round of interviews. Checking in with respondents on a regular basis in years to come — a major goal of the designers, who hope to keep the project going to 2021 — would require a lot more money.

"It will not be cheap," Dr. said. She said the amount needed in future years would depend on the frequency of follow-up interviews, among other factors.

Health experts also stress that the World Trade Center registry does not include any medical diagnosis or clinical examination. People who say in the interviews that they are still physically sick will be provided with referrals for medical care.

People who say they are still experiencing emotional or mental problems will be connected to mental health experts at Project Liberty, a crisis counseling service created by state and federal authorities after the disaster.

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