Ambitious study focuses on children's health, illness

The goal is to follow 100,000 kids into adulthood to discern how interactions between genes and the environment lead to disease.

By — Posted May 3, 2004

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The National Institute of Child Health and Human Development in conjunction with the Centers for Disease Control and Prevention, the Environmental Protection Agency and the National Institute of Environmental Health Sciences is in the midst of planning the National Children's Study. This ambitious project intends to follow 100,000 children from womb to age 21 starting in 2006. It would bring together industry and science in the hope of determining how environmental factors impact children's health and which genes can make that impact better or worse.

"There are a number of conditions of children that are serious and burdensome for which we have evidence that there are potential causes or contributors but we just don't have enough scientific evidence for conclusions and necessary actions or interventions," said Peter Scheidt, MD, MPH, director of the study's program office.

Many of those involved describe the effort as one similar to the Women's Health Initiative, only geared to children. Their hope is to answer questions related to learning disabilities, asthma, autism, cancer, addiction, hearing problems and other medical conditions. Is sudden infant death syndrome more common among infants who do not use pacifiers? How do smoking cessation programs for parents affect children? What chemicals in the environment affect the risk of injury and violence?

"The chance to evaluate a large number of children starting at birth and then following them into early adulthood to try to answer some of these questions is very exciting," said Dennis R. Ownby, MD, a member of one of the working groups and professor of pediatrics and medicine at the Medical College of Georgia in Augusta.

Those involved in children's health are eager to see the study take place because data on how various environmental exposures change children are limited but urgently needed.

"It is a superb undertaking," said Martin Lorin, MD, professor of pediatrics at Baylor College of Medicine in Houston and a board member of the Children's Environmental Health Institute in Austin.

"It's the only way to get information about a number of environmental factors. My biggest regret is that I'm 70 years old so I doubt that I'll get to see the final data from it," he said.

The obstacles, however, are significant. Planners are wrestling with ways to keep subjects connected to the study over its long life span. They want a sample that represents the U.S. population. They must maintain high ethical standards and patient privacy. There is also the significant challenge of tracking and storing data and samples for so many people and structuring the study so that new questions can be asked as they come up.

"It is challenging," said Dr. Scheidt. "But people have said that about other big projects such as coding the human gene and going to the moon. You have to put one foot in front of the other and do the very best you can."

How is it going to work?

There is also the question of the role of primary care physicians. The Agency for Healthcare Research and Quality is using their primary care network to look at the feasibility of office-based physicians collecting data. Those involved in study planning note that primary care must be involved.

Major medical groups including the American Academy of Family Physicians, American College of Obstetricians and Gynecologists and the American Academy of Pediatrics have been contacted and are aware of the study, but their roles in the study are not yet defined.

"I certainly see us involved," said Michael Fleming, MD, president of the AAFP. "We really do need to figure out some way to involve our practicing family physicians."

But some suggest that this study may be more successful if it wasn't asking quite so many questions.

"It's very, very, very broad," said Dr. Fleming. "My suspicion is they're probably going to have to focus down more. If it is focused and comes down to talk about specific illnesses, there's no question we'll be heavily involved."

And even if challenges are overcome, the study may still not go forward. It was ordered by Congress in 2000, and funding was provided for its planning.

Three pilot sites are expected to open next year and the study should be underway by 2006. Those connected to it say, however, that future funding, which is estimated to be $2.7 billion over the next 30 years, is far from assured.

"It's very unclear whether the study is going to be funded," said Roberta Ness, MD, MPH, a member of one of the study's working groups and chair of the department of epidemiology at the University of Pittsburgh. "The tea leaves are not necessarily in great alignment at this point given all of the other budgetary constraints."

Those working to get the study off the ground, though, say its value will pay off long after it finishes. Raw data and samples resulting from the last major child health study, the Collaborative Perinatal Project in the 1950s and 1960s, still produce new discoveries.

"The richness of it is that the collection of information and samples over time allows many generations of researchers in the future to continue to tap those resources," said Dr. Ness. "Once those resources are available, there are innumerable questions that can be answered."

And many not associated with the study believe that its benefits would be worth the cost.

"Compared to going to Mars, this has a lot more potential for improving our lives," said Andy Spooner, MD, associate professor of pediatrics at The University of Tennessee Health Science Center in Memphis.

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Still gaps in kids' care

Children's health has been improved by increasing availability of lead screening, better health promotion for adolescents, and a reduction in the number of antibiotics prescribed for colds. Still, gaps remain.

Three-quarters of those younger than 18 do not receive care that is scientifically proven, according to an April report released by the Commonwealth Fund.

"Quality of Healthcare for Children and Adolescents: A Chartbook," reports that one-third of asthmatic children do not get appropriate controller medications and three-quarters of children with mental health problems are not provided with evaluation or treatment. On the success side, inappropriate antibiotic use has declined by half, and some states have rates as high as 80% for lead screening of children in the Medicaid program.

Report authors said data indicated a need to better understand what quality care means for children. It also highlighted the need for a more structured system that is easier for families to navigate.

This document is the second in a series of Commonwealth Fund reports examining health care quality issues. The first, in 2002, looked at the population as a whole. The next will look at the quality of care for Medicare beneficiaries.

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External links

National Children's Health Study (link)

"Quality of Health Care for Children and Adolescents: A Chartbook," report by the Commonwealth Fund, in pdf (link)

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