Long-term follow-up in newborn screening: the role of collaboration
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چکیده
منابع مشابه
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متن کاملLong-term follow-up data collection and use in state newborn screening programs.
OBJECTIVES To describe and analyze the types of data-related policies and practices that currently exist among state newborn screening (NBS) programs in relation to long-term follow-up (LTFU) and oversight for newborns with confirmed disorders. DESIGN A 19-question online survey. PARTICIPANTS Thirty-five state NBS programs. MAIN OUTCOME MEASURES Whether LTFU is performed, collection and u...
متن کاملPractices and perceptions of long-term follow-up among state newborn screening programs.
OBJECTIVES The purposes of the study were to describe and to analyze the types of policies and practices that exist currently among state newborn screening programs in relation to long-term follow-up oversight and activities for newborns with confirmed disorders and to examine the perceptions of newborn screening program leaders regarding long-term follow-up activities. METHODS A 23-question ...
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ژورنال
عنوان ژورنال: Genetics in Medicine
سال: 2016
ISSN: 1098-3600,1530-0366
DOI: 10.1038/gim.2016.99