Its magnitude was ambitious and unprecedented: The National Children’s Study promised to follow 100,000 American children from before birth to the age of 21. Researchers sought a better understanding of autism, obesity and cancer by tracking links between children’s environments and their health outcomes. Since 2007, Congress has appropriated about $1.3 billion to fund planning and research; millions went to four research centers in the St. Louis region alone.
But the project never moved beyond its pilot phase, and the National Institutes of Health has now confirmed that it never will. After delays and a review of the study’s feasibility, the director of the National Institutes for Health, Francis Collins, announced that no further data would be collected, and the study’s program office in Washington, D.C. will be dissolved.
Dr. Louise Flick of St. Louis University, who served as principal investigator for research in St. Louis during the pilot program, said the study had the potential to track how things like air pollution, chemicals and housing impacted children’s health on a national scale. In 2012, data collection in St. Louis shifted from local universities to a private research organization, NORC at the University of Chicago.
“It was a massive undertaking, and I think a really important idea. (In the past 60 years), we have changed the environment dramatically, and we don’t have a lot of information about it,” Flick said.
The city’s first participant in the study, a child born in March of 2011, will soon turn four. Between 100 and 200 families recruited in St. Louis will no longer be participating.
“There was a real sense of mission and doing something for the future health of children that was an important part of their willingness to put in the hours that this requires,” Flick said.
The NIH placed the main part of the study on hold in July of 2014, as a working group conducted a feasibility review of the project. In addition to criticism over increasing costs, the group raised four concerns about the management of the study:
1) The aims, design, and scope of the study appeared unlikely to provide meaningful insights into how environmental factors influence health and development.
2) The study did not incorporate new technological and scientific advances (the study was originally authorized by Congress in 2000).
3) The sampling design was overly complex, and the study design remained incomplete after years of development.
4) The extent of management oversight slowed the process of the study.
In a list of the study’s strengths, the working group wrote that there is a critical need for research that links environmental exposures to health outcomes, and that no similar studies in the U.S. are tracking the spectrum of human development, or environmental impacts on minority and disadvantaged communities.
Flick said she personally believed the study became unsustainable because so many changes were made to the design over the past 14 years. She added that politics within the NIH, multiple changes in leadership and a high number of research centers—40 at one point—made the project unwieldy.
Though the data that has already been conducted will likely be published in some form, researchers said the study cannot be continued locally, even if alternate funding is identified, due to privacy concerns.