Youth Research Cohort Update

The World Trade Center (WTC) Health Program is currently in Phase 1 (Community Engagement) of a four-phased approach to establish the Youth Research Cohort. With continued community participation, we hope to create a representative group of individuals exposed to 9/11 at 21 years or younger for research purposes.

Ongoing Progress

• The Program continues to review community feedback provided through the Program’s Youth Research Cohort FRN.
• Program staff are developing the software requirements specification and support documentation necessary for the development, approval from the Office of Management and Budget (OMB), and initiation of an online web portal for prospective cohort members to self-enroll. Although the time needed to obtain OMB approval is not known, it may be up to a year based on previous approvals.
• We continue to work on establishing the community-facing website (separate from the web enrollment portal). This will help facilitate communication with the community about progress on the research cohort.
• NIOSH is currently seeking new proposals for research projects that include studies of survivor youth. Applications can be submitted now. The notices can be found on the research webpage under Funding Opportunities.

As a reminder, the four-phased approach is expected to continue through summer of 2025, when the WTC Health Program plans to select an option and begin implementation. There will be opportunities for community participation in all phases. These opportunities to participate may include public comments, public meetings, input on future research needs, providing feedback on the youth research cohort website and communications program, reviewing cohort options and challenges, and providing input to help the Program prioritize options for developing the cohort.

The WTC Health Program is exploring all opportunities for community engagement, which will include a community-facing website for all community members to use and contribute, and community co-learning sessions for information-sharing about the cohort, challenges, and options. The WTC Health Program is planning to develop workgroups to study cohort options and challenges and help plan public engagements. Separate from this community-facing website, the WTC Health Program has heard recommendations for a web-based portal for potential cohort members to self-enroll. The WTC Health Program is looking into ways to develop a portal for this purpose.

There will be other opportunities for participation in all phases. These opportunities to participate may include public comments, public meetings, input on future research needs, providing feedback on the youth research cohort website and communications program, reviewing cohort options and challenges, and providing input to help the Program prioritize options for developing the cohort.

Helpful Resources

The Youth 9/11 Health Effects Library is available to help researchers navigate and quickly assess literature reporting health effects of individuals exposed to 9/11 at 18 years or younger. Over a hundred publications in this library are original research into health effects, care or treatment, or evaluations of programs that were established to help children after 9/11. From this library, publications can be queried or filtered by condition, study group, group features, exposure, and study design.
View Youth 9/11 Health Effects Library

As new information becomes available, we will make these updates here as well as through our Program eNews. If you have not already signed up for Youth Research Cohort eNews, subscribe by clicking the button below.
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