title: Standardizing newborn screening results for health information exchange.
abstract: Newborn screening (NBS) is a complex process that has high-stakes health implications and requires rapid and effective communication between many people and organizations. Currently, each NBS laboratory has its own method of reporting results to state programs, hospitals and individual providers, with wide variation in content and format. Pediatric care providers receive reports by mail, email, fax or telephone, depending on whether the results are normal or abnormal. This process is slow and prone to errors, which can lead to delays in treatment. Multiple agencies worked together to create national guidance for reporting newborn screening results with HL7 messages that contain a prescribed set of LOINC and SNOMED CT codes, report quantitative test results, and use standardized units of measure. Several states are already implementing this guidance. If the guidance is used nationally, office EHRs could capture NBS results more efficiently, and regional and national registries could better analyze aggregate results to facilitate improvements in NBS and further research for these rare conditions.
authors.affiliation: National Library of Medicine, Bethesda, MD;
authors.forename: Swapna
authors.initials: S
authors.lastname: Abhyankar
authors.forename: Michele A
authors.initials: MA
authors.lastname: Lloyd-Puryear
authors.forename: Rebecca
authors.initials: R
authors.lastname: Goodwin
authors.forename: Sara
authors.initials: S
authors.lastname: Copeland
authors.forename: John
authors.initials: J
authors.lastname: Eichwald
authors.forename: Bradford L
authors.initials: BL
authors.lastname: Therrell
authors.forename: Alan
authors.initials: A
authors.lastname: Zuckerman
authors.forename: Greg
authors.initials: G
authors.lastname: Downing
authors.forename: Clement J
authors.initials: CJ
authors.lastname: McDonald
mesh_terms: D003142:Communication; D034742:Electronic Mail; D066275:Health Information Exchange; D006801:Humans; D007231:Infant, Newborn; D039703:Logical Observation Identifiers Names and Codes; D015997:Neonatal Screening; D039061:Systematized Nomenclature of Medicine; D014481:United States