Future of nationwide children's study is hazy

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US senateby Lois M. Collins

Plans for the nation's first large-scale, long-term study of children are proceeding along two paths: The first involves getting ready to hit the pavement and start enrolling families by at least 2008; the other would fold up shop.

The future of the highly publicized National Children's Study, created by Congress in 2000, is at a crossroads. The president's 2007 budget proposal not only didn't fund the study but actually directed it to be closed down. Congress responded with strong language from both the House and Senate indicating avid support for the study. But Congress hasn't actually committed a penny yet in future funding.

"They've implied provision (for the study) but didn't say what that will be," said NCS director Dr. Peter Scheidt. "So we've responded by preparing to do both."

If the president's language and budget are adopted, he said, "we're obligated to terminate our efforts." If Congress comes through, "we're preparing to go forward."

The study was first announced with a clear and ambitious plan. NCS would enroll about 100,000 children from before birth to age 21 and perhaps beyond. It would even enroll women of child-bearing age who are not pregnant to study the children from pre-conception to adulthood.

Psychological, social, environmental and genetic factors that can impact well-being would be at the heart of the research, with special attention paid to what happens in pregnancy and to birth defects, asthma, obesity, diabetes, autism and other health issues. The study would include both biological and environmental sampling — including tests of the environment at schools nationwide.

Two years ago, the University of Utah and Salt Lake County were designated one of six vanguard centers. And though the future has been uncertain since the president's budget proposal went out nearly a year ago, that center's preparations haven't slowed down, according to Dr. Edward B. Clark of Primary Children's Medical Center and the U., who is to serve as Utah's principal investigator.

"We're standing here marching in place," he said. "We have funding to keep the core group and the planning group intact. We're working hard on developing procedures and methods, but we need the big funding. The next step (if the funding comes) is to launch in the community in 2008.

"It's not the case that it's dead now. We're cautiously optimistic and feel the support from around the country has had a real effect in Congress."

Funding for the next year would take about $69 million, Scheidt said. Once field work starts, it will rise to about $150 million nationwide. But that's small change, advocates maintain, if the study can boost understanding and perhaps lead to prevention of common childhood health problems like injury, obesity, diabetes, asthma and neurobiological disorders. Last year, those five health problems alone cost Americans $758 billion.

The U. vanguard center has a core team of 10 people working across the spectrum from environmental and biological sampling to building a political base in the community — that's "politics with a big P and a little P," Clark said — and talking to citizens about what they view as their important needs.

Scheidt said Congress has talked about a continuing resolution to maintain the same level of funding for National Institutes of Health, Health and Human Services and other programs, including the study, through 2007. If that happens, there "may be no budget this year" but the study funding would be secure for at least another year.

It's also possible that they will pass a budget that includes the study when Congress reconvenes, he said. Or not.

© 2006 Deseret News Publishing Company