The World Trade Center Health Registry Re-Surveys 9/11 Survivors Beginning June 1, 2006

It’s been nearly five years since the terrorist attacks on the Pentagon, United Airlines Flight 93, and the twin towers of the New York City’s World Trade Center, but the full effects of the devastation have yet to be determined. This past week, New York City officials and the Department of Health initiated the distribution of a follow up survey to the more than 71,000 emergency personnel, healthcare workers, and city residents who were in the area of the decimated ground zero at the time of the attacks. The surveys are being employed by The World Trade Center Health Registry in an attempt to discover what, if any, the physical and emotional health consequences that prolonged exposure to the intense conditions of ground zero and surrounding area may have caused.

The World Trade Center Health Registry, also referred to as the 9/11 Registry, initially interviewed 71,437 people who were in the vicinity of the WTC during the terror attacks or who responded to emergency calls to the destruction site. Conducted in 2003 and 2004, participants were surveyed via telephone about their experience during 9/11, and about their personal repercussions. Eligible participants included people who were in a building, on the street, or on the subway in the immediate area, people involved in recovery, rescue, clean up, or other functions at the WTC site, people working at the WTC recovery operations on Staten Island, students and staff of pre K-12 schools and daycare centers in the area on September 11, 2001, and people who were living in the area on that date. (World Trade Center Health Registry: About the Registry)

During the initial 30-minute telephone survey, enrollees were asked to share information about where they were on September 11, 2001, how much time they spent in areas with dust, smoke, and fumes, whether they had experienced any health problems since the date of the attacks, whether they experienced an increase in anxiety or sadness since that time, and about how The World Trade Center Health Registry might contact them for follow up or for more information. (World Trade Center Health Registry: About the Follow-Up Surveys)

On Thursday, June 1, 2006, a Department of Health program to have follow-up surveys sent out to all the reachable original participants of The World Trade Center Health Registry was rolled out. The goal of these surveys, conducted over two years after the first study, is to help the 9/11 Registry to determine what the health consequences of exposure to the debris and exigent environmental conditions of the immediate area were in the people involved, and to try to gauge the lasting emotional ramifications of their experiences at and around the site.

The surveys that are currently in distribution ask questions similar to the original telephone inquires of 2003 and 2004. The Department of Health is looking most closely at incidence of respiratory problems, anxiety, and post-traumatic stress disorder. The DOH is hoping that information about the health of the participants two years after the initial investigation will help to shed some light on the longevity of the symptoms experienced by victims and responders. The plan of the registry when the surveys were initially introduced in 2003 was to occasionally check back in with enrollees over a period of twenty years following the first inquiry, with the intention of gathering updated information and determining any long lasting effects of exposure to the environment of the 9/11 attacks. The surveys rolled out this week represent the first of those intended check-ins.

The World Trade Center Health Registry has come under some scrutiny in recent months for not being able to successfully reach conclusions about the effects of 9/11 on those immediately involved and for failing to provide information and treatment to the survivors. (, June 1, 2006: Officials Begin Survey for 9/11 Registry) Department of Health Commissioner Thomas Frieden acknowledges that the DOH does not currently have the answers about the long-term health and mental health consequences of the attacks. Frieden continued, stating that they “know that those exposed to dust and fumes of 9/11 report a high rate of respiratory and mental health symptoms,” but that they don’t know how long those symptoms may be expected to continue. (, June 1, 2006: 9/11 Registry Wants to Re-Interview Participants)

Whatever information is discovered by the statistical results of the surveys rolled out this past Thursday, it is clear that the picture of the true ramifications of the attacks of September 11, 2001 remains unfinished. According to Frieden, it will take months to gather the data from the surveys, and a report on those results may be completed by the end of the year. DOH health officials plan to release guidelines sometime this year that will provide physicians with information about how to better treat survivors of 9/11. (, June 1, 2006: Follow Up Survey Begins for 9/11 Registry)

The intention of The World Trade Center Health Registry to continue to follow participants over a period of twenty years is simultaneously encouraging and discouraging. While one may applaud the initiative of the DOH and the 9/11 registry for their willingness to commit themselves to the discovery of information about the health concerns of 9/11 survivors, it is hard not to consider the fact that their twenty year plan is indicative of the fact that the devastation of the terror attacks of 9/11 continues, and that it may be a long, long time before we truly understand just what the consequences of that day were, if we are ever able to do so.

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