NEW YORK, NY August 12, 2004 —The city and federal Health Departments want to see how the destruction of the World Trade Center will affect the long-term health of people who were in Lower Manhattan on September 11 th . Despite almost a year of canvassing, advertising and press-releasing,' only a fraction of those eligible have signed up - and time is running out. WNYC's Fred Mogul reports.

FM: It isn't hard to find people who were in Lower Manhattan on September 11 th . But it is difficult to find people who have registered the news about the World Trade Center Health Registry. Project organizers have spent more than 2 million dollars on advertising - in subway stations, at bus stops, on the airwaves and in newspapers. Workers have passed out leaflets. With the enrollment ending on August 31 st , Registry workers now are mainly concentrating on particular sub-groups, according to City Health Commissioner Dr. Thomas Frieden.

TF: We're particularly interested in increasing the number of residents of this area who are enrolled, increasing the number of people who worked on the site in rescue, recovery and cleanup operations who enroll, and increasing the number of children and schoolchildren who enroll.

FM: The Registry is a 300-question phone survey. It takes half an hour to complete, and asks people where they were on and after September 11 th , and what health symptoms, if any, they noticed. Dr. Kelly Henning says survey administrators hope to follow up for many years to come - perhaps decades - to see if any patterns emerge.

KH: It's a public health tool to help us identify groups that may be at higher risks for health problems later and perhaps help us make some recommendations about screening or, potentially, about what sort of treatment people should have.

FM: Maybe it will turn out that people closest to the Twin Towers collapse have a much higher chance of lung disease -- but maybe they'll have no higher risk. These statistical associations, in turn, could lead to people being actively screened for illness - or could give people peace of mind because their long-term risk is low.

KH: We hope people will think of the health registry as a way to get some answers for everybody - for themselves, as an individual, and for all those persons who were exposed.

FM: Officials expect the Registry to end up enrolling 60-to-70-thousand people, and they're pleased with the participation. They say the 20-million-dollar study had no specific recruitment goal, but as one phone interviewer says, reciting her official script

SH: About 200-thousand people may join the list, and we plan to maintain the study data for up to 20 years.

FM: Officials are touting the WTC-Registry as the largest post-disaster study ever done in the U.S. - almost twice as large as the one after Three Mile Island , which registered 38-thousand people. One scientist says, even so, there aren't too many registries to compare it with -- and the most famous one, in Hiroshima and Nagasaki , involved 120-thousand enrollees. Epidemiologists contacted for this story were divided on whether the WTC study will be large enough to detect illness patterns. Joseph Boscarino is a senior scientist at the New York Academy of Medicine.

JB: It could work with 50-thousand, but it might get kinda sparse going out 10 years from now, looking at some of these exposures, and looking at them among certain risk groups.

FM: Although not closely familiar with the details of the Registry, Boscarino had other concerns, too - about how well people recall details three years ago or about how representative the sample is. Tribeca resident Fraya Berg signed up herself and her 6-year-old son, Eli, for the Registry, because she likes the idea that someone will be keeping an eye on their health.

FB: It didn't seem like there was a downside to it. I just thought it would be a good idea, because if we're registered we'll be notified, if there are health aspects we should know about.

FM: Berg thinks government researchers could downplay the impact of September 11 th on her health. But she hopes there will be a check - and that independent scientists will be able to evaluate the same raw information and reach their own conclusions. The Health Department says it does plan to share its data - but will decide who gets access.

LINKS

World Trade Center Registry: http://www.nyc.gov/html/doh/html/wtc/index.html

Agency for Toxic Substances and Disease Registry (of the Centers for Disease Control and the U.S. Health Department): http://www.atsdr.cdc.gov/

New York Committee for Occupational Safety and Health : http://www.nycosh.org/registry_factsheet.html