USU participates in largest children’s study
Utah State University is playing an important role in the beginning stages of the National Children’s Study, the largest study of children’s health ever planned in the country.
Nationally, the study aims to collect data on more than 100,000 children from before birth to age 21, in an effort to understand what environmental factors influence conditions such as diabetes, autism and asthma. Enrollment of participants, which is expected to continue for five to seven years, started in Cache County in December 2010.
“Children today are not as healthy as our generation is and they’re not expected to have as good of a quality of life down the road as we are due to disease. We’re seeing higher rates of asthma, autism, diabetes and of course, obesity,” said Vonda Jump Norman, one of the study’s co-principal investigators for the Cache County area. Understanding the environment better triggers of diseases in childhood might lead to better treatments, Norman said.
Commissioned by Congress in 2000, the plan has developed slowly. Eventually, the study will be conducted in 105 sites across the country, but right now is in a pilot phase involving 37 locations. Seven “Vanguard Sites,” including one at University of Utah, began collecting data early last year.
Any woman living in Cache County who is pregnant or is planning to become pregnant can apply to be part of the study, though to become a participant a woman must live in one of the 33 randomly selected neighborhoods and pass a screening process.
“We encourage any woman from 18 to 49 to call us to be screened to see if they’re eligible to participate … because they’re contributing to a body of information that can only help children here in Cache Valley and everywhere in the nation,” said Amy Anderson, community liaison with the study. Anderson also said that people who aren’t eligible themselves are encouraged to tell those who might be eligible.
Researchers will collect data from participants via survey and by testing variables in their homes and at places where the children spend a lot of time. Biological and environmental samples will also be collected, and though the goal is to gather as much data as possible, participants can opt out of answering any question or providing any sample they choose and not be dropped from the study, Anderson said.
The large scope of the project may raise concerns with some over confidentiality and precautions have been taken in an attempt to protect information collected from participants. Access to the data will be controlled by the National Institutes of Health, co-principal investigator Mark Innocenti said. Researchers who want to work with the data will be required to submit grant proposals and undergo a variety of background checks to see if they are qualified to use the data and also what specific parts of the data they will be allowed to use.
Funded by taxpayers through the National Institutes of Health, the study has faced political opposition because of its cost. In 2009, the Senate appropriations committee threatened to suspend funding for 2010 after they learned that estimates of project’s total cost, initially $2.7 billion, had doubled.
When asked about cost concerns, Innocenti said the study will reduce money spent by the government and private citizens because of conditions like asthma and schizophrenia.
“They cost the country … about $650 to $800 billion a year. If you could make a one percent difference in prevention and intervention, you’ve paid for the entire 25 years (of the study) in two years,” Innocenti said.
The study will also bring jobs to the valley, he said. Currently, the study employs 25 full-time positions in the community, and as it moves from the pilot phase to implementation, that number is expected to grow.
In an effort to keep costs down, 30 of the 37 locations in the study’s pilot phase are testing the effectiveness of three separate recruitment strategies. The method being tested in Cache County involves spreading information about the study and asking those interested to contact the researchers. Inaugurating its efforts in the community, the study sponsored “National Children’s Study Night” at the USU-Weber basketball game last November. Since then, awareness has been promoted dozens of different ways, including mailing out information, community outreach at campus and sporting events, and public service announcements. A new Aggie Ice Cream flavor, “Aggie Birthday Cake,” has been developed to spread awareness of the study. The new flavor will be available seasonally over a five-year period and is set to appear in supermarkets this April, said Don McMahon, director of USU’s Western Dairy Center.
Anderson said the response to this kind of strategy has been good in Cache Valley.
“We are well-received everywhere we go. People in Cache Valley care so much about the children of our community that they’re very willing to support research that’s going to eventually help kids to live a healthier life,” she said.
People seeking more information can visit cache.NCSutah.org or call 435-797-KIDS (5437).
– steve.kent@aggiemail.usu.edu