The National Library of Medicine (NLM) recently launched the Newborn Screening Coding and Terminology Guide (http://newbornscreeningcodes.nlm.nih.gov), an important step toward efficient electronic exchange of standard newborn screening data. The new web site was created in collaboration with the Office of the National Coordinator for Health Information Technology, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention, reporting the results of newborn screening tests whose contents can be accurately interpreted by recipient electronic systems for use in care, follow-up and analysis. This standard framework will also enable the use and comparison of data from different laboratories.

Newborn screening is an important part of public health, but use of test results is complicated by wide variations among states in the ways tests are conducted and results recorded – and by inefficient, paper-based communications. The current situation can delay rapid attention to a child's health problems, and it creates frustration and extra work for parents, health care providers, and public health authorities. The new Web site is a "translator" to help deal with current complexity and to promote more efficient electronic exchange of newborn screening information in the future.

The web site is designed to help states move toward the use of common terminology and coding standards, a key step in enabling electronic exchange of laboratory test information, as well as readying newborn screening information for inclusion in electronic health records (EHRs). The site covers more than 100 conditions and lists the terminologies and codes used for each. It also identifies the tests that may be used in screening for each condition. For all the conditions and tests included, the preferred standard terminology and codes are indicated. Users of the web site can view the information interactively or download electronic datasets of standard names and identifiers for use in their systems.

The goal of the Newborn Screening Codes and Terminology Guide is to provide a standard framework to observe and compare nationwide trends from newborn screening test results, which will also support efforts of the biomedical research community at NIH and elsewhere to improve newborn screening methods and evaluation.

Source:  National Library of Medicine, http://www.nlm.nih.gov/news/newborn_screening_data.html