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3 Uses of Residual Newborn Screening Samples in Research
Pages 9-18

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From page 9...
... • Combining information from newborn screening programs with other health data could greatly improve the delivery of health care, although difficult issues of privacy, security, and technological coordination need to be resolved. THE CONTINuuM FROM SERVICE TO RESEARCH There is a feedback from service to research and back to service, said Anne Comeau, in which research to improve newborn screening, public health, or basic science has led to advances in the other endeavors.
From page 10...
... All of the blood spots were analyzed simultaneously to determine the seroprevalence of HIV in the nine regions, which ranged from 11.6 percent to 0.3 percent. Thus, by performing research on the dried blood samples collected for the purpose of newborn screening, public health programs in Massachusetts were able to use this information to determine where to locate HIV services for women of childbearing age.
From page 11...
... Yes, yes, and yes," Pass said. Sharon Kardia, professor and chair of epidemiology at the University of Michigan and co-director of the Michigan Center for Genomics and Public Health, listed some of the key attributes of residual dried blood spots.
From page 12...
... Alan Fleischman also commented on the wide range of uses for residual newborn screening samples, both for public health purposes and for research directed toward individuals. The gradual expansion of these uses has had a major effect on public health programs, he said.
From page 13...
... Very valuable forms of research can be conducted using only anonymized samples, but the information in a dried blood spot can be particularly valuable when it is combined with other sources of data, Kardia said. Birth records, death records, immunization data, hearing test results, nutrition programs, cancer registries, Medicaid records, and other types of public health information can all be integrated with the information derived from dried blood spots.
From page 14...
... Residual dried blood spots, if combined with information in public health registries, could provide an integrated picture of the health of entire populations, starting from birth. Such a study would offer a unique opportunity to look at the effects of health policies on health outcomes, for example.
From page 15...
... Over the long term, the CHI2 program will allow clinicians and public health officials to engage in meaningful exchanges of health information. Such exchanges will reduce the reporting burden, help track infants over
From page 16...
... used in New York State. SOURCE: NYSDOH Child Health Information Integration Project; current as of May 2010.
From page 17...
... In the short term, such a system could determine how many infants were born and not screened in New York State as well as how many babies who were screened in New York were not actually born in New York. It could also improve the quality of demographic data, improve tracking and follow-up measures, better track infant deaths, and provide for integrated childhood medical records (see Box 3-1 for an example of the potential use of the CHI2 approach)
From page 18...
... And practicing clinicians and public health programs would be unable to use existing Department of Health information to improve the clinical and public health outcomes of New York's children. The long-term outcomes of having such a system are largely unknown, yet the system offers sufficient promise that New York State is vigorously pursuing it.


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