Establishing the Youth Research Cohort—Progress Update

The World Trade Center (WTC) Health Program continues to make progress towards establishing the Youth Research Cohort (YRC).

What is the Youth Research Cohort (YRC)?

The YRC includes individuals who:

1. were aged 21 years or younger and within the “YRC Defined Area” (see map below) of New York City, including all of Brooklyn, during the exposure period from September 11, 2001 (9/11) through July 31, 2002, and
2. are willing to participate in future research on the health and educational impacts of exposure to toxicants and other hazards resulting from the events of 9/11.

What is its purpose?

Participants in the YRC, including those whose mothers were pregnant with them during the exposure period, may choose to be part of future studies on the health and educational impacts of 9/11 exposure.

Who will be able to join?

Anyone who meets the following criteria will be encouraged to join the YRC whether or not they have current health concerns.

• Individuals:
  • who were 21 years of age or younger on 9/11/2001 (born between 9/12/1979 - 7/31/2002), and
  • were present in the YRC Defined Area during the exposure period (9/11/2001 - 7/31/2002).
• Individuals whose mother:
  • was pregnant with them during the exposure period, and
  • was present in the YRC Defined Area during the exposure period (9/11/2001 - 7/31/2002).

YRC Defined Area

Note that eligibility to participate in the YRC is based on the YRC Defined Area (in purple), while eligibility to enroll in the WTC Health Program is based on the New York City Disaster Area (in red).

When will research studies begin?

Research involving the YRC will not occur right away but will start once the number of people participating in the YRC grows large enough. At that time, the WTC Health Program will provide funding opportunities for researchers to study health and educational impacts possibly associated with 9/11 hazards. Researchers with Program approval, including those not funded by the WTC Health Program, will be able to recruit study participants from this cohort. Participation in research is voluntary.

If I am a WTC Health Program member, will my care be affected?

Although the YRC is being created and managed by the WTC Health Program, it is separate from the medical monitoring and treatment that the Program provides. Choosing not to participate in the YRC or in future research will not affect the care existing WTC Health Program members receive.

How will participant data be used and kept safe?

Only the WTC Health Program and approved researchers will be granted permission to contact YRC participants. The WTC Health Program will only share participant information with researchers who have proven they can conduct high quality research while adhering to scientific and ethical standards. Researchers must follow strict rules to maintain participant privacy. To learn more about how we keep member data safe, visit the Privacy Practices page.

What's next?

The WTC Health Program is engaging with communities, researchers, and individuals interested in the health and educational impacts of 9/11 to increase awareness of the YRC. The Program is also developing a web-based portal that people who meet the criteria for joining the YRC can use to sign up.

How do I stay updated and spread the word?

Stay up to date with all YRC-related news by visiting the Youth Research Cohort website periodically and/or signing up for YRC eNews . If you know someone who might be interested in participating in the YRC, help spread the word by sharing this update with them.