Devised by Congress in 2000, the National Children’s Study (NCS) was designed to track the health of children from birth to adulthood in an effort to identify the best ways to prevent childhood disorders including asthma, autism and attention deficit disorder. But it’s in danger of being stopped before it even starts, thanks to cost, mismanagement and outdated research methods.
The study was supposed to begin this year, as explained by KaiserHealthNews.org (KHN), and was considered to be boldly ambitious. Advocates say it could influence a wide range of parental choices, from what to feed their kids to what household products to buy. They say its potential is endless for preventing illness that presents later in life, and probably will influence not only parents, but insurance coverage and public policy.
“We don’t have the evidence we need to truly improve children’s health in this country. We need this study. … The importance of the investment is clear,” Lisa Simpson told KHN. She’s president and CEO of AcademyHealth, a membership group of policy analysts and health services researchers.
The study is to follow 100,000 children for 21 years. But it’s expensive, and some people believe its scientific approach is antiquated. According to KHN, experts from the National Institutes of Health (NIH) are studying these concerns, and they’re due to make recommendations next month about the initiative’s future.
The impetus behind the study was a growing sense that children suffer disproportionately from the effects of social and environmental factors. In 2007, the Vanguard Study began a precursor to the NCS, sort of a smaller, beta version. It is underway in 40 sites testing how to recruit women who expect to be pregnant in the near future, and testing data systems.
But it’s been a rocky adventure, KHN reports, and in July, the Institute of Medicine, the nonprofit, independent organization that advises government and the public with unbiased and authoritative analysis, issued a report questioning whether the main study should proceed if it didn’t undergo major changes.
The Vanguard Study’s own researchers criticized its design and technological deficiencies.
Still, Jane Holl told KHN, “It could tell us so much about relationships — starting in the prenatal period through late childhood — and how those factors affect early adulthood.” Holl oversees 10 of the 40 pilot sites.
In 2013, federal funding for the research was put on hold for the main study after Congress appropriated $165 million per year for it — $30 million less than initially planned. It made that money contingent on the IOM evaluation, which focused the study’s advocates on the NIH recommendations, and how to make less money go farther.
It would be a shame if this truly novel idea disappeared into dust. Usually, research focuses on adult illnesses, so studying children until adulthood and figuring out how to prevent later problems would be a significant addition to the body of health science.
“If I’m a member of Congress,” James Perrin told KHN, “I’m more concerned about heart disease at 50 years old, and that’s where we’ve funded it more actively. We need to know what we can do in childhood,” said Perrin, who is president of the American Academy of Pediatrics.