## Abstract The term βpilot studyβ has been used over the years to describe the evaluation of the many elements involved in deciding whether a proposed condition should be added to a newborn screening (NBS) panel, and until recently, was unilaterally used to describe the evaluation of the assay to
NICHD research initiative in newborn screening
β Scribed by Alexander, Duane ;Hanson, James W.
- Publisher
- John Wiley and Sons
- Year
- 2006
- Tongue
- English
- Weight
- 109 KB
- Volume
- 12
- Category
- Article
- ISSN
- 1080-4013
No coin nor oath required. For personal study only.
β¦ Synopsis
Abstract
Recent changes in genetics research have created new opportunities to improve the scope and quality of newborn screening services. Changes in newborn screening should be supported and directed by an organized program of research. The NICHD Research Initiative in Newborn Screening includes the development of systematic methods to identify additional conditions appropriate for newborn screening; development and testing innovative interventions and treatments to improve outcomes; education of the provider workforce; development and implementation of appropriate information and communication systems for parents and providers; and, sponsoring an ongoing program of research and research training. Future needs will include the development of a national translational research infrastructure, prevention research and research into behavioral and social sciences issues. The NICHD Research Initiative in Newborn Screening is expected to be an ongoing and vital initiative that adapts itself to new scientific findings, technological developments, changes in the public and personal health care system, and our evolving understanding of the needs of affected individuals, families and the community. Β© 2006 WileyβLiss, Inc. MRDD Research Reviews 2006;12:301β304.
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