Careful analysis of WTC Health Registry data is now underway

Most enrollees in the World Trade Center Health Registry, a comprehensive and confidential health survey of those directly exposed to the events of 9/11, reported having one or more respiratory problems that either began or got worse in the weeks and months after the terrorist attack, according to the latest quarterly report by the New York City Department of Health and Mental Hygiene (DOHMH).

As of November 20, 2004, WTC Health Registry staff had completed 30-minute telephone interviews with 71,609 enrollees representing all 50 states, Puerto Rico, and at least nine other countries. Survey questions included where individuals were on September 11, 2001, how long they were in areas with smoke and fumes, and whether they have had any health problems since 9/11.

The WTCHR enrolled 14,725 residents who reported living below Canal Street on September 11, 2001, representing 25 percent of the total residential population south of Canal Street at the time, according to the 2000 U.S. Census. Enrollment interviews occurred between September 5, 2003, and November 20, 2004.

"We now know that tens of thousands of registry enrollees reported significant respiratory and mental health symptoms," DOHMH Commissioner Thomas Frieden said in a statement. "Whether these symptoms persist at present -- and for how long they will persist -- will require further investigation, and much more needs to be done before definitive conclusions can be drawn. We will work with the federal government to ensure that funding continues for this historic effort," he continued.

The health data presented in the quarterly report are preliminary, and further analysis is required to verify the findings. Registry staff will follow up with enrollees over the next 10 to 20 years to more fully understand the impacts of various physical and mental health problems. The data also will be made available to other 9/11-related health projects.

"The formal enrollment phase of the registry has ended, and we can now begin further investigations," said Dr. Henry Falk, director of the Agency for Toxic Substances and Disease Registry and the Center for Disease Control's National Center for Environmental Health, in a statement. "Our goal is improved health, and with this body of data, we can begin to identify trends and patterns of illness or disease that might otherwise go undetected or undocumented, and discover potential ways to prevent or treat these problems in the future."

Understanding the effects of the WTC disaster on respiratory and mental health will be a main priority of the data analysis process, and careful evaluation of both the baseline interviews and follow-up surveys will enable analysts to distinguish between short- and long-term health issues. Another area of focus will be on the creation of an infrastructure to support collaboration with health professionals and researchers while protecting individual confidentiality. Enrollee information will be protected by the registry's Federal Certificate of Confidentiality at all times. Finally, it is anticipated that future Data Snapshots will focus on findings from published reports relevant to WTCHR enrollees.

Registry enrollees included residents in this area

Eight percent of adults enrolled in the registry as of September 10, 2004, reported symptoms consistent with serious psychological distress within 30 days of the time they were interviewed -- a rate higher than the citywide average of 5 percent. The data presented by the registry strongly suggest that direct exposure to the events of 9/11 had a measurable mental health impact on these enrollees. Further analysis, such as a demographic comparison of registry findings to similar citywide data, is needed to better understand the types of psychological distress.

Most people exposed to a traumatic event may continue to suffer symptoms of distress and may have impaired abilities to function long after a disaster. Those who recognize these symptoms in themselves should contact a mental health professional or call (800) LIFENET (800-543-3638). Spanish speakers may call (877) AYUDESE (877-298-3373); Chinese speakers may call (877) 990-8585.

The WTCHR was launched on September 5, 2003, to track the health of residents, workers, and others who were directly exposed to the collapse of the World Trade Center or who worked at the WTC site, at the recovery operations on Staten Island, or on barges that transported debris.

Findings drawn from the registry will enable researchers to observe patterns that may otherwise be invisible to individual physicians. All information provided by enrollees will be kept strictly private and confidential, and no medical examinations or tests were required for initial enrollment.

The WTCHR is a collaborative effort between DOHMH and the federal Agency for Toxic Substances and Disease Registry (ATSDR), with funding provided by the Federal Emergency Management Agency (FEMA).

For more information on the WTC Health Registry, visit http://www.wtcregistry.org.