From Deseret News archives:

Children's study will be far-reaching

Look at genetics, environment to include not-yet-born Utahns

Published: Friday, Oct. 28, 2005 11:20 p.m. MDT
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Recruitment plans are being made now, in anticipation of the study actually beginning in 2007, said Sarah Keim, deputy director of the program office for the study, within the National Institutes of Health. It may follow census tracts or school boundaries or some other logical, statistically sound basis that ensures an end result that adds up to a picture of Salt Lake County's demography, from ethnicity to income.

Sara Christensen spoke movingly of what such a study would mean to her family. Lillie, the youngest of four children, was diagnosed at age 2 1/2. She's now 8. And while she's very loved, raising her has been at times "hard," her mother said. She can rattle off statistics about autism, but it's harder to understand what causes it and what might prevent it. "Let's figure it out," she said.

Just think of it, challenged Dr. Edward B. Clark, medical director of Primary Children's Medical Center and head of pediatrics at the U. He will serve as the vanguard center's principal investigator. None of the children who will participate in the study have been conceived yet. And the study will use technologies that didn't exist five years ago.

Although the study is set to run at least 21 years, congressional funding willing, the first results would be released as early as 2009, Keim said.

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It is the power of the early results that Fleischman believes will ensure that the study runs its full term. He thinks findings will be so clear and compelling that the study will have no trouble maintaining ongoing financial support from Congress. But to do that, they have to have all their funding for the planning stages, too.

Planners would like to see the children's study run even beyond that, perhaps following the babies their entire lives. But they acknowledge it's a huge commitment of time and money. This year, costs will be about $69 million. And it will get more expensive when families are enrolled, what with testing and storing and processing and also paying families an incentive to join and stay in. They're toying with paying $500 a year. Another possibility is setting up education savings accounts for participants to help fund college, Clark said.

Participants will have about three visits during pregnancy and an evaluation immediately after birth, with later checkups to coincide with typical "well-child" visits, Clark said.

Keim said the U., with help from its partners in the state Health Department and Intermountain Health care, will recruit about 1,250 people. The six vanguard centers and 125 other centers expected to join them later in the study hope to be done recruiting by 2011.

Congress asked for the study in 2000, but it's funded year to year, and Fleischman said he hopes America will see the value and let their representatives know how important this is to everyone. They must fund the whole study for it to have meaning, he warned.

"We need 100,000 children. If we try to answer the questions we're asking — you can't do it with a smaller number of children and get real answers."

Its long-term and comprehensive nature creates a sample that will allow researchers to make inferences at causation that can't be done with haphazard recruitment, Fleischman said.


E-mail: lois@desnews.com

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Jeffrey D. Allred, Deseret Morning News

Lillie Christensen, 8, who has autism, and her mom, Sara, attend press conference for National Children's Study at Primary Children's Medical Center.

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