Work Groups

NEWBORN SCREENING SURVEY

In order to get a better understanding of parents’ opinions on newborn screening for later onset disorders and preferences for when/how to notify parents the risks related to a positive newborn screen for later onset conditions, the WSRGN developed a survey for parents. This survey was distributed at the Hawaii New Baby Expo in May 2016, Seattle Savvy Family Expo in March 2017, and California Kids Expo in April 2017. Findings from these surveys will be used by regional and possibly national NBS policy makers to develop appropriate policies as to when to notify parents of risks related to a positive newborn screen for later onset conditions.

Project Lead: Sylvia Mann
Staff Lead: Jennifer Boomsma

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