The National Institute of Child Health and Human Development (NICHD) is working with NCI Enterprise Vocabulary Services (EVS) and numerous contributors from national and international academic, clinical, and research institutions to provide standardized terminology for coding pediatric clinical trials and other research activities.
In 2008-2010, NICHD led a Pediatric Terminology Harmonization Initiative that successfully harmonized child life stages from six primary sources and established several agreed sets of standard coding terminology. A second harmonization project integrated over 2,000 unique terms used by three neonatal research networks.
In 2013, a collaborative effort began between NICHD, NCI EVS, and outside experts in their fields to define the areas of Pediatric Adverse Events, Perinatology, Pediatric Rheumatology, Pediatric Endocrinology, Pediatric Infectious Diseases, and Pediatric Oncology.
In addition, the Pediatric Terminology project has decided to adopt as part of the Pediatric Terminology standard three Clinical Data Interchange Standards Consortium (CDISC) terminology standards for the coding of Anatomical Locations, Directionality and Laterality.
Pediatric Terminology sets are developed, updated, and published monthly through the NCI Thesaurus and EVS.
Pediatric Terminology files are further described and available for download from this EVS File Transfer Protocol (FTP) site: https://evs.nci.nih.gov/ftp1/NICHD/About.html.