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Youth Research Cohort Update – FRN Closed; More Opportunities for Participation Coming Soon

February 6, 2024

The World Trade Center (WTC) Health Program is actively reviewing responses to the Youth Research Cohort Federal Register Notice – Request for Information (FRN) that recently closed and is looking into opportunities for ongoing community participation in the effort. While the ability to provide public comment through the FRN process has concluded, our work with the community to develop the Youth Research Cohort is just getting started.

The WTC Health Program thanks all who responded to the FRN, the Request for Information on SAM.gov and who provided comments at the Scientific/Technical Advisory Committee meeting in June 2023. The WTC Health Program is reviewing all comments. The Program is committed to keeping the 9/11 community involved in successfully creating a representative group of 9/11 youth survivors. To do so, we will need as much participation as possible in all phases of developing the Youth Research Cohort. This means we need input from individuals with a wide variety of backgrounds and experience. This includes Program members, eligible youth, organizations serving 9/11 youth, researchers, clinicians, program leaders, and policymakers, among others. There will be opportunities to participate in community engagement throughout all phases of Youth Research Cohort Development. These phases are expected to continue through summer of 2025, when the WTC Health Program plans to select an option and begin implementation.

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.

Youth 9/11 Health Effects Library is now 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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