Data sharing and integrated analyses rely on
harmonizing (or standardizing) critical
concepts, specific terms and data fields. Development of a harmonized terminology is a fundamental step toward enabling interoperability. The harmonized terminology requires consensus among its user community, such as pediatric clinicians and investigators, to ensure its successful implementation. The terminology must be accurately defined and consistently used by both data generators and consumers and involves an agreement among stakeholders. Current efforts towards expansion of the Pediatric terminology are focused in this direction.
Child health research needs a consistent terminology to bridge concepts among multiple disciplines and across developmental stages. The NICHD Pediatric Terminology is based on a developmental stage framework that follows a child's development through the various life stages from pre-birth to 21 years of age. The terminology is developed as smaller subsets focusing on various sub-aspects of the pediatric domain. The overall terminology development approach begins with identifying and prioritizing terminology subsets based on defined research
use cases that correspond with specific pediatric sub-domains and child life stages. Child Life Stage classifications used by other standards such as International Conference on Harmonisation (ICH
), Clinical Data Interchange Standards Consortium (CDISC
), American Academy of Pediatrics (AAP
), Centers for Disease Control and Prevention (CDC), and Systematized Nomenclature of Medicine (SNOMED) have variability. The Child Life Stage classification mapping diagram (see below) shows the timeline of child life and how it maps to the harmonized life stages (NICHD Integrated Pediatric Terminology) derived from the various classifications used by other standards.
Harmonizing multiple terminologies mapped to child life stages
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NICHD Pediatric Terminology is developed systematically with community input and implementation. An overview of the entire terminology development process is given in the figure below.
Terminology Development Process
The terminology development process includes the following steps:
The NICHD Pediatric Terminology is the complete set of terminology that currently includes content within the following sub-domains: