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CDC to create SIDS registry
Scripps Howard News Service


March 30, 2009

The federal Centers for Disease Control and Prevention in a few months will launch a revolutionary surveillance program to study why nearly 5,000 babies die unexpectedly and mysteriously each year.

The health agency is inviting up to seven states to participate in a pilot study for a National Sudden Unexpected Infant Death Case Registry that will collect an unprecedented amount of information about these deaths.

Coroners and medical examiners attribute most of these deaths to Sudden Infant Death Syndrome (SIDS), but child safety experts are becoming increasingly suspicious of this diagnosis.

"This will give us a better understanding of what actually is happening to these infants, whether or not they are really dying by accidental suffocation," said CDC epidemiologist Carrie Shapiro-Mendoza. "We are building and enhancing Child Death Review programs so that we can get complete population-based data."

Plans for the pilot study were made after Scripps Howard News Service conducted a national reporting project called "Saving Babies: Exposing Sudden Infant Death." The study found the nation's coroners and medical examiners are inconsistent in how they diagnose unexpected infant deaths.

The study also found that a small but growing number of coroners -- using federal guidelines that require trained investigators go to the death scene -- are concluding that most of these deaths are accidental asphyxiations caused when babies were placed in an adult bed or an over-stuffed sofa.

The new infant death registry will record details of the sleeping environment, including whether parents slept with their infants.

"This is really exciting. We've never seen anything like this," said Theresa Covington, director of the National Center for Child Death Review. "It will assemble, in one place, all of these different diagnoses so that we can look at the risk factors in a logical way and know which infants died in risky environments."

The registry may improve the quality of the coroners' investigations since it will ask them to note exactly where and how a child died, Covington said.

State health department have until May 11 to apply for a share of a $280,000 fund to operate the pilot study. The program will begin Oct. 1.

"There will be a lot of interest in this since it will give states some dollars to pay for what they already are doing," said Covington.

Participating states will enter information on all unexpected infant deaths using the Web-based Case Reporting System operated by the National Center for Child Death Review. Information will include results of infant autopsies, pathology and toxicology reports, results from the death scene investigation, and the children's medical records.


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