Newborn Screening Parent Fact Sheet Maintenance, Development and Distribution
Goal: Provide accurate, understandable information for parents when they are finding out that their newborn may have a disorder detected on the newborn screening panel.
A previous project that involved members of the WSRGN created the base website and initial fact sheets related to information about conditions detected via newborn screening for http://www.newbornscreening.info. This website is now managed by the WSRGN, which provides ongoing maintenance of existing and development of new fact sheets. The fact sheets are in English and Spanish. We are currently working on additional features that include videos and interactive documents to help families learn about disorders detected by newborn screening.