The World Trade Center Health Registry, the largest post-disaster exposure health registry in U.S. history, is following a diverse cohort of 71,437 directly affected people who performed 9/11-related rescue/recovery work or lived, worked or attended school in lower Manhattan on 9/11/01. The goals are to identify the long- term physical and mental health effects of the 9/11 WTC disaster; disseminate findings and recommendations to enrollees and others exposed, the public, and the scientific community; share information about 9/11-related resources and services; and inform healthcare policy and disaster response planning.
Specific aims are to: (1) Maintain the Registry as a valuable public health resource; (2) Expand knowledge about the long-term physical and mental health effects of 9/11 by continuing the Registry research program; (3) Conduct community activities to respond to the physical and mental health concerns and specific healthcare needs of enrollees and others exposed to 9/11; and (4) Maintain a Treatment Referral Program to help enrollees find care for 9/11-related health problems.
Aim 1 activities will sustain critical Registry infrastructure through communications and tracing activities to maintain contact with enrollees and maximize those with valid contact information; timely communications with enrollees to address concerns and keep them engaged and interested in participating in future research; outreach activities to boost response to Registry studies; and consultation with scientific, community and labor advisors.
Aim 2 entails conducting priority epidemiological analyses using data from the Wave 1 (2003-04) Wave 2 (2006-08) and Wave 3 (2011-12) surveys, including analyses to assess risk factors for the development or persistence of serious respiratory and mental health conditions over time; developing and conducting a Wave 4 survey using multiple survey modes (paper, web and telephone) to ascertain the health status and 9/11-related healthcare needs of the cohort 13-14 years after 9/11; extending assessment of cancer and mortality incidence through 10 years post-9/11; and investigating potential emerging health conditions through public health surveillance and follow-up studies. The Registry will also facilitate independent and collaborative 9/11-related research by providing qualified external researchers with de- identified data and access to enrollee subgroups for recruitment.
Aim 3 will be achieved by disseminating (e.g., via a web-site, annual report, e-newsletters) Registry findings and recommendations together with information on 9/11-related services and resources to enrollees, the public and policy makers; developing and providing data resources such as de-identified Registry databases and online data tools for enrollees, the public and researchers;
Aim 4 will be achieved by offering healthcare referrals to enrollees with 9/11 related health conditions and symptoms based on information from the Wave 3 and 4 surveys and evaluating the program and sharing findings with the WTC Health Program.
The World Trade Center Health Registry contributes to public health by identifying the long-term physical and mental health effects of the 9/11 disaster and healthcare needs among people who performed rescue/recovery work or lived, worked or attended school in lower Manhattan on 9/11/01 and by informing response to future disasters. The Registry shares its health findings and recommendations with the 71,000 enrollees, the public, scientists, policy makers, WTC Health Program and others who may treat people affected by 9/11. The Registry also shares information on 9/11-related services and offers treatment referral and health promotion opportunities to enrollees with ongoing heath conditions.
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