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NIH ends longitudinal children’s study

Budget and management problems sink plan to follow 100,000 children from birth to adulthood.

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The US National Institutes of Health (NIH) has cancelled its plan for an ambitious, multi-decade study of environmental influences on children's health, agency director Francis Collins announced on 12 December.

The National Children's Study (NCS), commissioned by the US Congress in 2000, was to assess how physical, chemical, biological and psychosocial factors affected 100,000 children from birth to age 21. The NIH has spent US$1.2 billion on the effort and enrolled roughly 5,700 children in a pilot study at 40 centres around the United States. But a combination of scientific disagreements and mismanagement has delayed the study's official start.

Speaking at an NIH advisory committee meeting, Collins likened the study to “a Christmas tree with every possible ornament placed upon it”. He says that the NIH will find alternative ways to study child development and environmental influences on health.

Collins put the study on hold in June, after the US Instiute of Medicine released a report that found multiple problems with the NCS structure and budget. On 12 December, an NIH working group recommended that the study be dissolved, a suggestion that Collins and his advisory council accepted.

All kinds of noble efforts were made to try to put this study into a credible space,” Collins told Nature. He maintains that the study is “not being killed” but will take a different form.

Still, the NIH plans to shut down the 40 centres it opened for the pilot study, and to stop collecting data for the children already enrolled in that research.

The working group that evaluated the NCS says that samples from the centres should be stored for future analysis. But that may be difficult, warns Marie Lynn Miranda, an environmental health expert at the University of Michigan in Ann Arbor.

Miranda, a member of the NIH working group that evaluated the NCS, says that the study lacked a standard method for recruiting families and other crucial steps, so the existing data could be hard to analyse.

Nigel Paneth, an epidemiologist at Michigan State University in Lansing, says that it is not clear whether the NIH can win financial support from Congress for another large, longitudinal study. But he argues that addressing the same questions as the NCS, in some other form, would be worth it. 

 “It’s important to remember that we still have the problems that the Children’s Study was trying to deal with,” he says — such as birth defects and early childhood diseases that can only be studied with a very large sample size. “That way hasn’t worked, so now we have to say what will work. “

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