Work Groups

NEWBORN SCREENING PARENT FACT SHEET MAINTENANCE, DEVELOPMENT AND DISTRIBUTION

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 currently under the management of the WSRGN, which provides ongoing expert updates and national distribution of these and additional fact sheets. The website has 20,000 unique visitors per month. The English and Spanish language fact sheets were recently updated.

The WSRGN is considering a project to make short videos for each disorder that would include family and specialist perspectives about receiving a positive newborn screen result.