Off to a Healthy Start

Benton County is playing a leading role in a national long-term study on children’s health that researchers hope will shape policy and practices for years to come.
The county is one of 105 nationwide, and the only one in Arkansas, chosen at random to take part in the National Children’s Study. Researchers will follow 100,000 children — including 1,000 to 3,000 in Benton County — from pre-conception through age 21 to see how environmental and genetic factors affect their health and development.
The findings could eventually lead to legislation and other actions that improve children’s health and have significant economic impact, said Pearl McElfish, director of the Benton County study team.
“All of us want healthy children, and even though most children grow up strong, healthy and happy, our nation continues to see a rise in the rates of asthma, autism, diabetes, premature birth and birth defects,” McElfish said.
 The NCS will be the largest longitudinal study of children’s health and the environment ever performed in the U.S. It’s coordinated by the National Institutes of Health with input from the Centers for Disease Control and Prevention, the U.S. Environmental Protection Agency and other federal departments and agencies.
In Benton County, the study is being carried out by the Arkansas Children’s Hospital Research Institute and the University of Arkansas for Medical Sciences.
Thirteen members of the Benton County team work at the ACHRI in Rogers. Another six are based at UAMS in Little Rock.
Because of the study’s commitment to protect the confidentiality of participants, the NCS doesn’t release any personal identifiable information.
However, one volunteer agreed to contact the Northwest Arkansas Business Journal to talk about her experience in the study.
Leah Williams, 28, signed up in March during a prenatal checkup at Willow Creek Women’s Hospital in Johnson. Now the mother of a 2-month-old boy, Williams said she liked the idea of being part of something that will help babies be safer and healthier.
“The whole study really is for the future,” she said. “I really encourage women to get involved, because it can help their children or grandchildren.”
 
Out in Front
Benton County is one of 40 “vanguard,” or pilot study, sites.
The vanguards test various strategies, such as how participants are recruited, that will shape the design of the main study.
The county also is leading the study in information management design, said Sherry Lloyd, the team’s marketing and communications manager.
Once the necessary technology infrastructure to handle the data is in place, the Benton County site will begin the main study, McElfish said. That’s expected to happen in the next 12 to 24 months, and will involve collecting data on environmental and biological factors like air, water, diet, sound, family dynamics, community and cultural influences, and genetics.
Findings will be released as the research progresses, she said, so potential benefits can be realized as soon as possible.
The Benton County site started recruiting volunteers in January and surpassed expectations, McElfish said.
For the recruitment pilot phase, the team hoped to recruit 100 women who were pregnant or planning to become pregnant, she said.
But it actually enrolled 150, and in less time than expected.
More than 100 volunteers have already had their babies, and the rest are pregnant, McElfish said.
The team worked with 26 doctors and practitioners affiliated with local hospitals and women’s clinics to sign up volunteers ranging in age from 18 to 49.  
Registered nurses will collect data through periodic in-home visits, telephone surveys, questionnaires and medical histories until each child turns 21. Participants are modestly reimbursed for their time.
Williams said the nurses she’s met through the study so far have been warm and friendly, and the questions they ask aren’t too personal, “just like something you’d share with a friend.”
She doesn’t foresee any problems sticking with the study until her little boy turns 21. But volunteers can opt out at any time, she said.
“It’s nothing they force you to do.”

Opportunity and Challenges
Dr. Charlotte Hobbs, section chief of birth defects research and a professor of pediatrics at UAMS, is the principal investigator for the Benton County study. She’s responsible for its overall management and implementation.
 She and lead local investigator James Robbins, also a professor of pediatrics at UAMS, make frequent trips to Benton County to work with the staff there.
Hobbs, who’s also the director of the Arkansas Center for Birth Defects Research and Prevention, has met several volunteers and the nurses who enrolled them, and looks forward to going along on some home visits.
“That’s a part of the work that I really enjoy,” she said.
Hobbs said Benton County can be proud to be part of this groundbreaking study. The knowledge gained will bring about positive changes both in individual behavior and on a societal level, she said.
“We’ll have a large enough sample to ask questions such as what are some factors that might lead to prematurity,” Hobbs said.
“If we’re able to find factors that are modifiable, by identifying those risk factors, it would be incumbent on health officials to make efforts to modify the impact those factors would have on the developing fetus.”
McElfish said that while it’s exciting to be a leader in this study, “the challenging side of being a vanguard site is that there is constant change.”
And until the main study protocol is written, there will be a lot of change, she said.
The Benton County site has already seen some of these changes. Most recently, they’ve included budget and staffing cuts.
Funded by the NIH with a $14.4 million contract over five years, the Benton County study expected to get about $4 million for operations this year, McElfish said.
Instead, it was awarded $1.1 million for study operations and $1.7 million for a “formative” project in which investigators on the study team “are collaborating with other scientists locally and nationally to develop protocols for the collection of biological samples that may lead to new genomic and epigenomic discoveries related to children’s health and common illnesses.”
The NIH’s National Human Genome Research Institute defines genomics as the study of an organism’s entire set of genetic instructions, whereas genetics refers to the study of a particular gene.
Epigenomes consist of chemical compounds that modify those genetic instructions.
Because of the reduced funding for the Benton County study, a total of nine jobs were cut from the Rogers and Little Rock offices.
However, McElfish said it’s “highly likely” the study site’s funding will be increased after the federal budget for 2012 is passed.
“The study will continue, and will include biological and environmental data collection in the future,” she said. “What we don’t know is when that time frame will be.”
And when they do go forward with that portion of the study, they will be adding positions, she said.