At a Glance
2015 Priority List
Record parental notification of newborn screening diagnosis
The system shall be able to track that the child's legal guardians were notified of any newborn screening-related diagnosis.
Because newborn screening results are important and may have important implications for the future of the infant’s health and the health of others in the family, it is important to have data fields to alert providers whether families are aware of important findings and potential genetic diagnoses. Results of newborn screening may be delivered from many sources such as the health department, a specialist, or the primary care physician and may be shared via phone, mail, or in-person visits. It is important to document in the EHR who informed the parents and what they were told. The use of free text would suffice. The goal is to prevent a provider who has not seen the family before from omitting to share important information which has not yet been disclosed to the parents, from missing an opportunity to reinforce an important diagnosis or to provide followup for treatment and additional testing, or from failing to present conflicting information from what parents have already been told about their child.