Northwestern will spearhead the Chicago division of the nation’s largest and longest study of children’s health, after the Feinberg School of Medicine received a seven-year, $32 million dollar contract last week.

Sponsored by the National Institute of Child Health and Human Development, the Centers for Disease Control and Prevention and the Environmental Protection Agency, the study will follow 100,000 children across the country from birth to age 21 to explore the impact of environment and genes on health.

NU is the lead study institution in the greater Chicago area, although the University of Chicago and the University of Illinois at Chicago’s School of Public Health will help with community outreach and clinical services. NU will be one of up to 40 study centers in 105 locations nationwide.

“This is the largest, most ambitious study ever done,” said Dr. Jane Holl, principal investigator and Feinberg professor. “It’s really unprecedented.”

In Cook County alone, researchers will go door to door to 12,000 addresses preselected for socioeconomic variety to be a representative sample of the area. The first of 4,000 pregnant women will enroll in the summer of 2009.

The National Opinion Research Center, a research survey firm based at the University of Chicago, will conduct the fieldwork. Researchers will regularly interview and collect samples from children and their families – including blood, urine, hair and toenails, as well as household samples such as water, dust and air.

The project aims to find causes – and eventually, treatments – for health problems including obesity, heart disease, autism, birth defects and diabetes. Because the study will follow unborn children through adulthood, researchers can be sure that one factor causes a specific ailment. This differs from shorter studies which could only establish an association between a genetic or environmental variable and a health problem.

“Previous studies relied on asking subjects about their past,” said Holl, an attending physician at Children’s Memorial Hospital in downtown Chicago. “Now, we’re starting from the past, and we can understand the antecedents of adult conditions like heart disease.”

Although data will be collected from every child, not every sample will be analyzed, Holl said. For example, when some of the 100,000 children develop autism, researchers will return to the autistic children’s earlier samples for further study.

A major obstacle for the study is keeping children in the program for 21 years.

“Families move, parents split up, so attrition will be a major factor,” Holl said. “The key is providing them information and results, so they really understand the valuable contribution they’re making.”

Congress approved $69 million for the National Children’s Study, but only for the current year. If they fail to fund the study in any given year, the project will be shut down. But, Holl said, she has faith Congress will come through.

“The situation is no different from any other federally funded study,” Holl said. “And large studies have been completed before.”

Though no one has attempted a study of this size or duration, the researchers have experience with longitudinal studies. Holl maintained a 90 percent participation rate during a five-year study on Illinois welfare families, and the National Opinion Research Center also is collecting data for an ongoing 20-year study.

“We’re going to spend a lot of time with community groups to raise awareness about the study first, and we train our interviewers extensively before they begin fieldwork,” said Richard Rubin, vice president of the center’s office of business development.

Subjects will also be paid based on the extent of their involvement with the study. NU hasn’t established specific guidelines yet, but compensation will be similar to payment in other studies. Arden Handler, professor of community health sciences at UIC, estimated that a participant would be paid $20 for an hour-long interview.

“It’s not a salary or anything, but a token of appreciation saying that their time is important to us,” Rubin said.

The most highly anticipated result of the study? There are too many to count, Holl said. But every sample collected will be stored for at least 25 years, leaving the door open for future testing when more sophisticated tests and instruments are invented.

“We understand a lot about genetic material now, but we’ll know a lot more in coming years,” Rubin said. “Science moves on, and there will be new tests (available) that can only be imagined now.”

Reach Sarah Sumadi at [email protected].