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More than 40,000 enrollees of the World Trade Center Health Registry have already responded to the Registry’s third mass survey, which will close in mid-March. The Registry, established by the city Department of Health in 2002, is also working on several new 9/11 health studies, including one focused exclusively on cancer.
The Registry’s current survey is only open to the 71,000 first responders, residents, and workers that responded to its first questionnaire distributed in 2003-2004, according to director Mark Farfel. Over the years, the Registry has managed to maintain contact with more than 99 percent of this original cohort.
“That’s the group we’re following over time,” said Farfel. “We need to have this longitudinal approach, so we can understand the course of conditions that has already been reported, symptoms and conditions that are persisting, and anything that may be emerging.”
Once the responses to the latest survey are collected and organized, Farfel and his team, comprised of experts in fields such as occupational health, environmental health, demography and anthropology, will sift through the data in search of reoccurring descriptions of symptoms. The group will then conduct a formal analysis of their findings, which will likely be submitted for peer-reviewed publication next year or the year thereafter.
“We do want to begin looking at the patterns of illnesses reported in the [second] survey and see what’s happening with those conditions now,” said Farfel. “That’s a process that takes some months to do.”
The cancer study, which will be turned in for publication by March, is based upon matches to data through 2008 from nearly a dozen statewide cancer registries.
“We’re comparing the number of confirmed cancer diagnoses among enrollees to our expected numbers based on the general population of New York State,” said Farfel. “We’re also comparing the cancer rates of enrollees who are more highly exposed to rates of those who are less highly exposed, to see if there’s a relation between cancer and [Ground Zero] exposure.”
Asked about the push by John Feal and other 9/11 advocates to have cancer added to the James Zadroga 9/11 Health and Compensation Act, Farfel noted that the Registry wasn’t formed to make such recommendations to the federal government.
“We have a public system for people who are not covered or who can’t afford care,” said Farfel, referring to the city Health and Hospitals Corporation.
With respect to the Registry’s forthcoming study, Farfel noted, “We recognize that all of this is early and intend to continue cancer assessment study in the future.”
Meanwhile, the Registry is attempting to identify gaps in care, as many enrollees have indicated unmet health problems in the questionnaires. Nurses and other D.O.H. employees have joined forces with the H.H.C. to individually call and write to enrollees to let them know about treatment options. They’ve also regularly updated officials at the city Department of Education about local treatment for children adversely affected by 9/11.
The Registry’s outreach thus far has resulted in 1,000 first-time visits to the World Trade Center Environmental Health Center, which has locations at Gouverneur Healthcare Services, Bellevue Hospital Center, and Elmhurst Hospital Center.
“We think that’s meeting one of our core missions, which is responding to needs,” said Farfel.
The Registry’s outreach has also informed health articles such as a 2011 study published in the American Journal of Respiratory and Critical Care Medicine of lung function in area residents and workers.
“For that study,” Farfel said, “we invited subgroups for pulmonary function tests and had them complete a symptom and exposure questionnaire.”
Researchers unaffiliated with the Registry have also solicited feedback from Registry enrollees for their own 9/11-related studies on topics including W.T.C. evacuation experiences and post-traumatic stress disorder (P.T.S.D.) symptoms among first responders and their children.
“One of the strengths of the Registry is the large, diverse cohort we have — I think that makes us unique,” said Farfel.
Asked how the Registry would persuade its enrollees to participate in all the surveys and studies, Farfel said, “There are no financial incentives or special benefits, per se. I think there’s some motivation of just wanting to be part of an effort to make a contribution in understanding the impacts.”