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Pediatric Terminology: Current Efforts

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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.

Terminology Development Framework

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 External Web Site Policy), Clinical Data  Interchange Standards Consortium (CDISC External Web Site Policy), American Academy of Pediatrics (AAP External Web Site Policy), 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.

Diagram of how child life stages map to the harmonized life stages in the NICHD Integrated Pediatric Terminology and the various classifications used by other standards (SNOMED, CDC, AAP, CDISC, ICH-E11, and EPA)
Harmonizing multiple terminologies mapped to child life stages

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Terminology Development Process

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.

Timeline of the terminology development process, beginning with terminology planning and ending with terminology implementation
Terminology Development Process

The terminology development process includes the following steps:

  1. Terminology Planning:

    This phase includes identifying and prioritizing subsets based on NICHD scientific visioning and other initiatives or use cases, identifying clinical research use cases and defining the scope of the terminology, and identifying and engaging Subject Matter Experts (SMEs) to provide input into the terminology, as described below.

  2. Terminology Development:

    The development of the terminology is a collaborative effort, which includes soliciting input and feedback from SMEs into the proposed concepts, and then resolving conflicts and deriving consensus on the modeled terminology. For each subset, terms are identified from several resources, such as clinical guidelines, protocols, clinical forms, data collection instruments, etc. These terms are modeled based on the terminology meta-structure and organized in a taxonomy that depicts concepts and their relationships. The NICHD Pediatric Terminology meta-structure is the conceptual model of the terminology. The terms are then arranged in a hierarchy (subclass-superclass hierarchy). This step includes developing a taxonomic structure (“is_a” relationships), where each concept has a parent (superclass), and may have a child (subclass) depending upon the granularity. The terms are annotated by adding textual definitions and synonyms.

  3. Terminology Publication:

    After the terminology has been developed, reviewed and approved by the working groups and terminology experts, it is then formatted and submitted to the NCI EVS curators for publication. NICHD Pediatric Terminology concepts are organized as a subset in the existing NCI Thesaurus hierarchy. Each concept is assigned a unique code, term definition, and synonym/ abbreviation. Each concept has one or more association relationships (“Concept in Subset”) for easy retrieval from the terminology. The terminology is maintained by NCI Enterprise Vocabulary Services (EVS) and hosted on the LexEVS server. The terminology is available in MS Excel tab delimited format on the EVS ftp site (http://evs.nci.nih.gov/ftp1/NICHD).

    The terminology version is also available for download in OWL format from the National Center for Biomedical Ontology (NCBO) BioPortal External Web Site Policy, and is available to the broad research community, for browsing and commenting.

  4. Terminology Implementation:

    The NICHD Pediatric Terminology is being implemented in the National Children’s Study (NCS) and harmonized concepts from the terminology are being used to tag metadata concepts in the Metadata Repository (MDR) for the NCS.

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Available Terminology Subsets

The NICHD Pediatric Terminology currently includes content within the following pediatric sub-domains:

  • Newborn Screening
  • Pregnancy and Childbirth
  • Childhood Immunization
  • Neurological Development
  • Neonatal Research Network Terminology

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Last Updated Date: 05/29/2013
Last Reviewed Date: 05/29/2013
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