2011-11-18 / Community

Health Registry Launches Pediatric Health Survey

The World Trade Center (WTC) Health Registry, the largest post-disaster public health registry in United States, launched its third pediatric health survey this month.

More than 1,300 adolescent enrollees who were exposed to the WTC disaster will be asked to share valuable information about their health ten years after 9/11, including information about their quality of life, mental health including depression and stress symptoms, smoking/alcohol/drug use, and school involvement. Parents and guardians are also asked to provide information about their child’s physical and mental health. Parents and guardians of adolescent enrollees can obtain more information about completing this survey by e-mailing or calling the Registry at 1-866-692-9827.

“Children and adolescents who were exposed to 9/11 are now ten years older and their health concerns may have changed over the past decade,” said Health Commissioner Dr. Thomas Farley. “We need to hear directly from these young people and their parents. Whether it’s persistent post-traumatic stress disorder or respiratory illness that a young person is dealing with, filling out the WTC Health Registry survey helps us understand the potential long-term health effects of the disaster so we can help people more effectively.”

Data collection will continue through March 2012. Results from this survey will help identify potential late emerging and long-term health effects and address gaps in 9/11 health care services for adolescents. More than 3,000 children under the age of 18 were enrolled by their parents in the Registry when it began in 2003-04. Ten years later, many of the children are now adults and have begun to receive the adult survey as they turn 18.

Parents and adolescents will receive the survey which has two components, a parent survey and an adolescent survey, by mail or email and this is the first time participants will have the option to take the survey online. The survey takes approximately 15-20 minutes to complete and parents must consent to their child filling out the survey. Spanish and Chinese speaking participants will receive translated versions of the survey.

This past summer, the Registry launched its third adult health survey with more than 66,000 enrollees, including enrollees who were children during the second survey, but are now adults age 18 years or older. Nearly 30,000 enrollees have completed the third survey to date.

The World Trade Center Health Registry became the largest post-disaster public health registry in United States history when 71,000 people directly exposed to the WTC disaster voluntarily enrolled and completed the initial survey in 2003-04. The Registry was established by the New York City Department of Health and Mental Hygiene and the federal Agency for Toxic Substances and Disease Registry. The National Institute of Occupational Safety and Health has funded the Registry since May 2009. Registry findings continue to contribute to an understanding of the health impacts of 9/11 among persons directly exposed to the disaster. As of October 2011, the Registry has published 23 peer-reviewed papers in scientific journals. Additionally, several university-based researchers have recruited Registry enrollees for other 9/11-related studies and published their findings. More information about the Registry, its findings and opportunities for external researchers can be found on the Registry’s website.

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