The National Library of Medicine (NLM) has launched the “Newborn Screening Coding and Terminology Guide” at http://newbornscreeningcodes.nlm.nih.gov to enable the efficient electronic exchange of standard newborn screening data. The web site was created in collaboration with the Office of the National Coordinator for HIT, HRSA, CDC, as well as with a number of professional organizations.
The goal for the Guide is to provide a standard framework for reporting the results of newborn screening tests and to enable this information to be accurately interpreted by recipient electronic systems for use in care, follow-up, and analysis
Newborn screening is important, but test results can be complicated by wide variations among states as to the way that tests are conducted and the way that results are recorded usually by paper-based communications. The new web site translates the information in order to help deal with the complexity of the newborn screening information.
The site provides common terminology and coding standards, covers more than 100 conditions, and lists the terminologies and codes used for each condition. The site also identifies the tests that may be used in screening for each condition. Information is available on all the conditions and tests along with the preferred standard terminology and codes as indicated.
Users of the web site can view the information interactively or download electronic datasets with standard names and the identifiers for use in their systems. The site can also help researchers untangle the confusion of terms and tests that exist today.