Youth Research Cohort
Why is Research a Component of the World Trade Center Health Program
The Research Component of the World Trade Center Health Program was considered critical by those who pushed the legislation because we knew that the impact of the toxins would be felt in new ways that we could not anticipate at the time. We understood that those affected would need to be identified, the conditions they developed would need to be evaluated and confirmed, and that they would then likely need care. In order to accomplish this, the exposed population needed to be kept together as a group, so that as a group their health could be tracked.
That is why the Zadroga Act that created the program focused not only on medical monitoring and treatment for both responders and survivors, but on data collection and continuing research into what conditions had resulted from the exposures and could be associated with it.
The Statute mandated the creation of data centers to compile and aggregate information collected at the clinic level regarding the health of the Program’s members.
Research would also address the best practices to provide treatment for the injured responders and survivors and would measure the progress of the Program in these efforts.
To achieve all of this, the Program under the statute funds research at more than 15 million dollars annually.
You can see the Program’s research here on the Program’s website.
By keeping the Program members together, the Program ensures that there are sufficient numbers of affected people to provide statistically valid information about this population and their health.
The data helps the Program to assess the extent to which physical and mental health conditions have persisted, and whether any new symptoms and conditions have emerged, all to further progress toward the ultimate goal of identifying and helping to address gaps in physical and mental health treatment.
One example of the importance of this research is that peer reviewed research shows that Program members with cancers who received treatment in the Program have better outcomes those in the general population with the same cancers.
While the numbers of Program members, especially survivors, continues to grow allowing for more research that is statistically valid, some groups of those impacted by the toxins do not meet the scientific requirements for certain kinds of research. There aren’t enough of those who were youth at the time of their exposures in the current cohort of possible research subjects to do the needed research on the impacts to them. This especially includes issues with respect to child development, reproductive problems, cancers and overall health.
Although the largest research cohort available, the World Trade Center Registry, run by the NYC Department of Health has a 71,000-member cohort made up of responders and survivors, only 2869 of those enrolled were children at the time.
Without a sufficiently large youth cohort, we will not be able to determine what disaster-related health impacts may be emerging in people who were young and in the process of development at the time. All we will have are anecdotal reports of reproductive issues, developmental problems, autoimmune issues, and increased cancers in the population of people exposed at a young age.
Also, there isn’t a control group, a population of similar characteristics but who were notT exposed to the toxins in order to do the required research.
Why is a New Research Cohort Important
The development of a new Youth Research Cohort is a critically important initiative that Congress has directed the World Trade Center Health Program to undertake.
There were many children and pregnant women who lived, worked or attended school near the Ground Zero site on 9/11 and during the months and years following 9/11. Understanding any health problems that they or, for the pregnant women, their offspring may have developed as a result of 9/11-related exposures is a matter of great importance that has not been able to received sufficient research.
When the current WTC Health Program was created under the James Zadroga 9/11 Health and Compensation Act in 2011, Congress required and provided funding for research into the health effects of WTC-related exposures following 9/11. It was understood that the exposure to toxins that were present in WTC contamination might cause long term health problems in the exposed populations. Further, it was recognized that special dedicated efforts to understand these health effects over the decades following 9/11would be required.
However, the children and women of child-bearing age who had exposures on and after 9/11 as a result of exposure to WTC-related dust have not received sufficient attention and study in the effort to understand WTC-related health effects.
The reasons are numerous. First of all, only limited numbers of children and women of child-bearing age enrolled in the Program, and only a small number of children enrolled in the WTC Health Registry. Adding to the present difficulty of building a cohort is the fact that the population of people exposed at a young age has with adulthood become much more mobile.
Congress has recently taken action on this by authorizing and making funding available for the WTC Health Program to overcome the barriers to this research.
Through the efforts of Senators Gillibrand and Schumer, Congress has directed the Program to create the capabilities to do research that will identify, find, and enroll and study this heretofore neglected population, – the people who were 21 years old or younger on 9/11. This would include people who were in utero at the time.
This is research critical for two reasons:
- We need to know to what extent physical and mental health conditions have developed in this vulnerable population; and
- We need to know whether and how treatment for these physical and mental health conditions should be instituted.
This new research cohort will be able to provide the basis to determine whether any new conditions have emerged and further the goal to identify and help address gaps in physical and mental health treatment.
Over time, these efforts will be key to determining what conditions the World Trade Center Health Program will be able to provide treatment for, as well as the outcomes for those who are receiving treatment.
Prior Efforts to Expand Research Capabilities
The WTC Health Program initially tried to see if it could expand the possible pool for research of those who were children at the time, and to increase the number of more women of childbearing age.
In 2018, the WTC Health Program funded an attempt by the WTC Registry, which is run by the NYC Department of Health, to test methodology and the ability create a new research “Youth Cohort” that would be big enough to produce statistically significant science, even though many years had passed since 9/11.
Because of the problems that the NYC Department of Health and their vendor were having in this effort, 9/11 Health Watch recruited 9/11 Environmental Action (9/11 EA) to test some other methodologies to recruit people exposed at a young age who would be eligible for a future youth research cohort.
The purpose of the project was to test the effectiveness of an alternative to the City’s approach, which was based on peer outreach and messaging to gage the interest 9/11-affected young people, residents and former students in participating in possible future studies. Our goal was to see if we could “operationalize” the interest of 9/11-exposed young adults by creating a google form to capture their responses.
The form requested current contact information for respondents, whether they were residents or students on 9/11, and whether they would be interested in participating in a study of 9/11 health impact to people in their age-group. We hypothesized that this would be an effective method to gage this population’s interest in participating in a study of the health impacts from the events of 9/11, and its aftermath.
We gave 9/11 EA a grant of $2,700 dollars and they conducted the project from August 1, 2020, to September 13, 2020.
Our results, over 33 positive responses in six weeks, exceeded the results of the City’s effort, which spent hundreds of thousands of dollars and only achieved 31 positive responses over years of effort
The New Youth Research Cohort
Recognizing the importance to young survivors, their families and the whole community that the health of people exposed as children be tracked over time, in 2021, Senators Kristen Gillibrand (D-NY), Charles Schumer (D-NY) along with House colleagues Representatives Carolyn Maloney (D-NY), Jerrold Nadler (D-NY) and Andrew Garbarino (R-NY) included in their bipartisan effort, “9/11 Responder and Survivor Health Funding Correction Act” (HR.4965/S. 2683). This bill would not only address World Trade Center Health Program’s impending funding deficit, it also included a provision to create a new research cohort to be better able to better study the health impact of WTC exposures on young survivors.
While that legislation did not pass, the Senators and Representatives managed to add to the end of the year Omnibus spending bill a portion of the amendment, successfully including a billion dollars in additional funds towards the WTC Health Program deficit and providing for the authorization for the new research cohort to give the program the capabilities to better study the impact of 9/11 toxins on women and those who were children at that time.
The World Trade Center Health Program’s website describes the provision that was in the Omnibus legislation:
In December 2022, the Congress amended “Public Health Service Act (42 U.S.C. § 300mm–51(c)) section 3341(c) to include a Research Cohort for Emerging Health Impacts on Youth (individuals who were 21 years of age or younger on September 11, 2001). This act instructs the World Trade Center (WTC) Health Program Administrator, in consultation with the Secretary of Education, to establish this research cohort.
Consolidated Appropriations Act, 2023
The Youth Research Cohort may include:
- individuals who were 21 years of age or younger on September 11, 2001; and
- individuals who were in the area of Manhattan not further north than 14th Street; outside the New York City Disaster Area, or the borough of Brooklyn; and
- age-appropriate control populations as needed for research purposes.
The Youth Research Cohort must:
- be of sufficient size to conduct future research studies on the health and educational impacts of 9/11 exposures;
- include sufficient representation of individuals who were 21 years of age or younger at the time of exposure; and
- include individuals who are screening-eligible WTC survivors or certified-eligible WTC survivors.
The WTC Health Program states on their “Research Cohort Status Page” that for their next step in the development of the new cohort they:
“ 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.”
You can visit the programs “Youth Cohort” webpage here.
Youth Effects Research Library webpage here.
You can sign up on the WTC Health Program Website to get updates from the program regarding the development of the Youth Cohort here.
News Articles
June 21, 2023 — The Broadsheet — The Littlest Survivors: Meeting Today Launches First Scientific Look at the Children of September 11
The youngest children in the vicinity of the World Trade Center are now graduating college. Virtually no data exists about how their health has been affected by their exposure to more than 2,500 contaminants.
Documents
October 2020 Feasibility Study of Establishing a New Cohort of People Exposed to 9/11 as Children for 9/11-Related Research