By Julie Shapiro DNAinfo
Nearly 11 years after 9/11′s cloud of toxic dust descended on Lower Manhattan — enveloping several schools and hundreds of children — researchers still know very little about its effect on the youngest survivors.
To learn more, the World Trade Center Health Registry sent surveys to more than 1,300 Downtown adolescents and their parents late last fall, asking about the impact of 9/11 on their health.
But just one in three families responded to the survey, even after the deadline was extended twice, most recently to September 30. “The more people fill out the survey, the better our ability to understand their health,” said Mark Farfel, director of the World Trade Center Health Registry which tracks more than 70,000 people who were Downtown on 9/11 or in the days that followed.
“This is really likely to be our last opportunity to survey this adolescent population,” Farfel added, because by the time of the next survey, in 2015, nearly all of the children enrolled in the registry will have aged into adulthood.
Early studies on children and 9/11 showed that those who were exposed to the dust were twice as likely to develop asthma soon afterward, but there is very little research about other health impacts. Farfel estimates that for every 9/11 study about children, there are at least 10 about adults.
The World Trade Center Health Registry survey includes one questionnaire for the adolescents and a separate one for their parents, asking about everything from respiratory issues to difficulty concentrating in school.
The survey takes about 20 minutes to fill out and can be done on paper, over the phone or online.
In addition to mailing several paper surveys to the adolescents and their parents, the registry also followed up with phone calls and in-person visits and extended the deadline first from spring to summer and then from summer to the end of September.
Farfel thinks some parents may be reluctant to discuss 9/11 with their kids, especially if the children were extremely young when it happened.
Other parents may think there is no need to fill out the survey if their children are healthy — but Farfel said he wants to hear from everyone who is enrolled in the registry, regardless of whether they have any 9/11-related symptoms.
For more information about the survey or to request a copy, call 1-866-692-9827 or email firstname.lastname@example.org.