Can I Participate in the WTC Health Registry?

The WTC Health Registry is a study of the 9/11-impacted population being conducted by the New York City Department of Health. It includes the nation’s largest research cohort of 9/11 survivors – i.e. people who lived, worked, or attended school in lower Manhattan after the attacks – and is a vital source of information about the health impacts emerging in the 9/11 community.

Because many people did not find out about the WTC Health Registry in time to sign up for it, we frequently hear from people who are now eager to participate. Unfortunately, the registry closed its doors to new participants back in 2006. It now focuses on gathering information from the cohort it has already gathered established and using that data to inform other medical research on the topic.

In the last few years, however, a lively conversation bean about whether to reopen the registry to certain participants. Advocates pointed to several areas in which the registry’s initial outreach was lackluster and argued that certain impacted populations should be better represented in their cohort. One of these populations was millennials. The study only has around 3,000 millennial and young adult participants, though at least 40,000 people in this range were living or attending school downtown during or in the aftermath of the attacks.

Thanks in part to public pressure, the city is now in the feasibility stage of a plan to expand the number of young people in WTC Health Registry and hopefully learn more about the developmental health impacts of 9/11. Last fall they launched the first stage of their initial survey, with plans to send the survey out to additional young adults soon.

If you know young people who were in school in lower Manhattan on 9/11 and receive the NYC DOH survey related to this project, please encourage them to fill it out. It’s the best way to make sure we have good research on young adults going forward.