Can I Participate in the WTC Health Registry?
The WTC Health Registry is a longitudinal health 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. (If you’re thinking about the WTC Health Program, more information about the differences between those programs is available at our “WTC Programs Explained” page.)
In the last few years, a lively conversation has been happening 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 25,000 people in this range were living or attending school downtown during or in the aftermath of the attacks.
Bowing to public pressure, the city did conduct a feasibility study of the plan to expand the number of young people in WTC Health Registry and hopefully learn more about the developmental health impacts of 9/11. Unfortunately, they abandoned the plans, but NIOSH, which manages the World Trade Center Health Program, now plans to fund future research on this population. This was, in fact, one of the many topics covered in this month’s STAC meeting. (We’ll post a link to the video and transcript for the meeting once one is available.)
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