In early 2009, the NICHD initiated an ongoing effort to establish a core library of harmonized pediatric terms that enables clinical investigators to more readily compare and aggregate dataacross clinical research portfolios.
This effort drew on an analysis of reference terminology and literature sources, and used modeling, annotation, and semantic integration tools to produce newly harmonized pediatric concepts and their corresponding data elements. To commence this initiative, the NICHD focused on developing the terminology and metadata for content-specific data acquisition tools for neonatal and infant examinations.
The content of the newborn examination form was developed using newborn metabolic screening submission forms as a model to conceptually outline the comprehensive examination that fully assesses the health of a newborn. This initiative identified specific concepts and terms within the neonatal and infant examination domain and used existing resources, such as the National Cancer Institute Thesaurus (NCIt) and the Systematized Nomenclature of Medicine (SNOMED), to harmonize the various fields and develop consistent terminology for these areas. The neonatal and infant examination concepts were developed as part of a broader pediatric terminology that is based on a developmental stage framework that follows a child’s development through the various child life stages from pre-birth to 21 years of age.
Metadata Generation Workflow
The prototype effort was conducted in partnership with the National Cancer Institute (NCI) which hosts infrastructure and terminology/metadata services that are widely used by the biomedical community.