Advisers Say National Children's Study should represent US population

11:55
Advisers Say National Children's Study should represent US population -

an advisory committee met yesterday to consider the design of the national study of Special Education (NCS) is strongly came in favor of an option: the the study should recruit children from a geographic sample that represents the entire US population. But if the National Institutes of Health (NIH) will go with this plan is not yet clear.

Proposed by Congress 12 years ago, NCS aims to enroll 100,000 pregnant women and monitor the health of their babies from birth to 21 years In February, the NIH announced that because the original plan to recruit women to certain addresses in 105 counties was too expensive, he revised the design to cut 15% from the $ 193 billion budget NCS. Instead of recruiting women a probability sample of the population of the United States, the NIH said it might rather find women by physicians participating in the health care system, a so-called convenience sample of providers.

This proposal has attracted the concern of many researchers and questions of Congress. Those who perform pilot studies in 40 centers "vanguard" who have registered thousands of women were also alarmed to learn that some sites would soon be transferred to a new contractor.

At yesterday's meeting of the advisory committee and ad hoc advisers in Bethesda, Maryland, Alan Guttmacher, director of the National Institute of Child Health and Human Development (NICHD), which oversees the study, said that the NIH was looking for "a thoughtful exploration, people informed" of various sampling strategies NCS Director Steven Hirschfeld then stated that the role of 105 counties has not yet been decided.: "We still do not know what places will be in the sampling frame or not."

During the one-day discussion, committee members and others warned about the dangers of a convenience sample of suppliers. "I am very wary of a convenience sample, regardless of how it can be," said Edward Sondik, director of the National Centers for prevention of the Center for Health Statistics and control of diseases. He said a sample that does not represent the geographical diversity of the country could miss important environmental exposures that affect health. based on health care organizations could also leave out certain groups such as immigrants and undocumented workers poor, others said. (a dissenting member is coming of Jeffrey Krischer committee of the University of South Florida, Tampa, who suggested that the results could be "weighted" to reflect the entire population. )

Several people also expressed concerns about the NIH plan to save money by relying on electronic health records providers. Because the methods vary, there will be "problems" even with simple measures such as the height of a young child, warned member of Bruce Gelb committee of Mount Sinai Hospital in New York City.

Others have noted that the NIH has spent several years (and around $ 460 million to more than $ 750 million spent to date on NCS) strengthening relations with hospitals and communities the pioneering websites 40. "Certainly, we should try to use part of the investment," said the epidemiologist Michael Bracken of Yale University, an observer of the meeting.

Bracken was among the 28 investigators of the vanguard of 40 sites many of them spoke at the meeting, which provided the Advisory Committee an alternative plan that suppliers random samples in counties 105. the plan sets out the ways of conducting the main study in a budget of $ 3 billion by cutting biological samples and testing and enroll fewer preconceived women.

Guttmacher said after the meeting that the consensus was clearly in favor of a probability sample. "I think the thing was overwhelming that came from the discussion," said Guttmacher Science Insider. But NIH plans to seek greater involvement of federal statisticians and others before making a decision. "It is not an" either-or ". We must find an exact design at this point, "said Guttmacher.

NIH hopes to have more concrete proposals of the Advisory Committee meeting in July. The agency aims to issue requests for proposals for the study principal before the fiscal year ends on September 30.

Jennifer Culhane of the University of Pennsylvania and children's Hospital of Philadelphia (CHOP) said Science she Insider NIH not believe seriously considering retaining counties 105. "much of this [meeting] is theater," Culhane said, pointing to a recent NIH document prepared for Congress suggesting that he has already decided on a convenience sample . once the two centers vanguard led by CHOP close, she added: "I am planning to be 100% of it and I participated in this study for over 10 years.".

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