The Youth Research Cohort Status

The following information outlines ways the Program will engage the scientific, outreach, and industry communities in planning a strategy to establish the Youth Research Cohort (YRC).

This page will be updated to reflect progress across the phases.

1. Phase 1: Community Engagement

   Gather sufficient information from educators, scientists, and community members on options for establishing a youth cohort that will efficiently support future research.

   Status: Active
   The Program has contracted with RAND to assist the Program’s efforts to collect, organize, and summarize public input needed to plan the strategy for establishing the YRC. This process will be open to all community members with an interest in 9/11 youth research including survivors, survivor advocates, researchers, and clinicians and other health and social service providers.

   To accomplish phase 1, RAND will hold a series of open meetings for community members to participate, ask questions, and give input.

   Be notified on how and when to get involved by subscribing to the Youth Research Cohort eNews topic, or by visiting the Youth Research Cohort webpage updates.

   Help Plan the World Trade Center Youth Research Cohort:
   Youth Research Cohort Planning Informational Webinars Hosted by RAND

   Overview

   On 9/11 and in the months after, many children and young adults were living or attending school in Lower Manhattan and Brooklyn, New York. Decades later, questions remain about the long-term health effects from their experiences and prolonged exposure to toxic hazards.

   The World Trade Center (WTC) Health Program, administered by the National Institute for Occupational Safety and Health, which is part of the Centers for Disease Control and Prevention in the United States Department of Health and Human Services, has launched an effort seeking information from those interested in partnering on the planning and development of a World Trade Center Youth Research Cohort (YRC).

   The YRC will enable future studies on the health and educational impacts on anyone aged 21 years or younger at the time of their 9/11 exposures who were south of 14th St in New York City or in all of Brooklyn ( see the YRC Map below ).

   Youth Cohort Detailed Map

   The map below shows the eligibility area to enroll as a member in the Program and the area for participation in the YRC. The outlines in red show the geographic area for WTC Health Program membership eligibility. The larger purple shaded area defines the geographic area for YRC participation.

   

   What?

   The planning of the YRC will be a collaborative effort with planning meetings and activities taking place between February 2025 and November 2026. Across the planning and development period, the Program will work with community partners to define objectives, outcomes, and priorities; discuss considerations for the cohort design and data collection strategies; and identify the best strategies for recruitment and accessibility protocols.

   To prepare community partners for these activities, RAND will host three informational webinars in January 2025 via Zoom. The webinar will explain the opportunities to participate in the YRC planning and development process in detail.

   We encourage all members of the 9/11 community interested in participating in the planning of the YRC to attend one of these informational webinars.

   At the informational session, you’ll learn more about how you can support planning the YRC in three areas:

   • Design: Participate in activities to guide decisions about the YRC design;
   • Outreach and Recruitment: Create outreach and education strategies, and strategies to identify and recruit eligible participants; and,
   • Spread the Word about the YRC.

   Who?

   The Program seeks participation from interested people to partner with the Program who were directly affected by 9/11 or who work or have worked to improve the lives of those directly impacted, including:

   • 9/11 survivors;
   • Community and labor advocates;
   • Researchers, including environmental health and neurodevelopmental experts; and,
   • Healthcare and social service providers.

   This effort will be organized and coordinated by RAND, an independent, non-profit research organization.

   When?

   To ensure broad participation, the informational webinar will be held on the following three dates. All webinars will provide the same information. Registration information is provided below:

   • Thursday, January 9, 2025, 12:00 pm-1:00 pm ET
   • Tuesday, January 14, 2025, 5:00 pm-6:00 pm ET
   • Monday, January 27, 2025, 12:00 pm-1:00 pm ET

   Register for the informational webinar of your choice.

   Where?

   The informational webinars will be online via Zoom. You will receive an email with a URL link and instructions for the webinar about a week ahead of the event.

   Why?

   The YRC will support research on the health and educational impacts on the youngest lives affected by 9/11. The Program needs the views, ideas, and perspectives of the 9/11 community of survivors, researchers, and healthcare and social service providers to successfully plan and establish the Youth Research Cohort.

   Learn More

   Find more information on the Youth Research Cohort webpage, where you can also sign up for Youth Research Cohort eNews updates in your email.

   You can also sign up for the Program’s Youth Research Cohort eNews updates.

   In addition, you can email WTCYouthResearchCohort@rand.org

2. Phase 2: Options Development

   Status: Not Active
   Use the information gathered in Phase 1 to develop a set of options for moving forward with establishing the youth cohort.

3. Phase 3: Options Ranking

   Status: Not Active
   Engage community in ranking the options developed in Phase 2.

4. Phase 4: Option Selection and Implementation

   Status: Not Active
   Use the information from Phase 3 to select the preferred option(s) for establishing the youth cohort.

This approach is influenced by input received through the Federal Register Notice and the Request for Information posted and closed.