Pediatric Terminology Files

In early 2009, the National Institute of Child Health and Human Development  (NICHD) initiated an ongoing effort to establish a core library of harmonized pediatric terms, beginning with a focus on neonatal and infant examination concepts as part of a broader terminology framework. Continued efforts to harmonize pediatric terminology will support the acquisition, exchange, submission and archival of clinical research data, ultimately supporting the health and wellbeing of children.

The first four sets of terminology were the Pediatric Immunization Terminology, the Newborn Screening Terminology, Neurological Development Terminology and Pregnancy and Childbirth Terminology Subsets. In 2011 work began to establish a set of terminology for the Neonatal Research Network Terminology (NRNT) Subset. The NRNT subset contains concepts associated with neonatal research contributed by four neonatal research networks: Vermont-Oxford Network (VON), Children's Hospital Neonatal Database (CHND), the Neonatal Research Network (NRN) and NICHD. In 2013, two of six additional project areas were begun. In 2014, Pediatric Adverse Events Terminology and Perinatal Terminology were completed; the Pregnancy and Childbirth Terminology subset was subsumed by the Perinatal Terminology subset. Pediatric Rheumatology Terminology was added in May of 2015; currently under development are Pediatric Nephrology Terminology, Pediatric Endocrinology Terminology, Pediatric Infectious Disease Terminology and Pediatric Oncology Terminology. In addition, in 2015, the Pediatric Terminology adopted three subsets of terminology from the Clinical Data Interchange Standards Consortium (CDISC); this was done to leverage work already done by the CDISC group and mandated for use in clinical trial submissions by the Food and Drug Administration (FDA). Those subsets are the Anatomical Location Terminology, Directionality Terminology and Laterality Terminology subsets.

Pediatric Terminology files are available for download from an NCI EVS ftp site (http://evs.nci.nih.gov/ftp1/NICHD/)  in two formats, an excel spreadsheet and a text file. A representation of the hierarchy of NICHD terms is provided as well; the terms in this hierarchy, which are restricted to NICHD terms only, do not necessarily have a direct parent-child relationship within the NCI Thesaurus (NCIt). This file is provided to aid in the visualization of the terms specific to the Pediatric Terminology project. The Pediatric Terminology file contains the entire set of terms related to all projects within the Pediatric Terminology. Additionally, individual subset files are provided. All files contain the same column headers. A Changes.txt file is published monthly and contains all changes that have been made to NICHD content in the current production version of the NCIt when compared to the most recently posted previous file. A letter precedes the data that has changed from the previous version; "A" precedes a New Term for that subset, "C" precedes any modification to a concept, "D" precedes a term that has been deleted.


Pediatric Terminology: The entire collection of terminology. (Microsoft Excel 2007)
Pediatric Terminology (tab-delimited text)
Pediatric Terminology Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  (text)

CDISC SDTM Anatomical Location Terminology Subset: A comprehensive list of anatomical terms created by the Clinical Data Interchange Standards Consortium (CDISC) for the Standard Data Tabulation Model (SDTM), and accepted by the Food and Drug Administration (FDA) for clinical trial data submissions. This list was adopted by the NICHD Governance group for use with all Pediatric Terminology projects. (Microsoft Excel 2007)
CDISC SDTM Anatomical Location Terminology Subset (tab-delimited text)
CDISC SDTM Anatomical Location Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  (text)

CDISC SDTM Directionality Terminology Subset:A comprehensive list of directional terms in the context of anatomy, created by CDISC for SDTM, and accepted by the FDA for clinical trial data submissions. This list was adopted by the NICHD Governance group for use with all Pediatric Terminology projects. (Microsoft Excel 2007)
CDISC SDTM Directionality Terminology Subset  (tab-delimited text)
CDISC SDTM Directionality Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  (text)

CDISC SDTM Laterality Terminology Subset:A comprehensive list of laterality terms in the context of anatomy, created by CDISC for SDTM, and accepted by the FDA for clinical trial data submissions. This list was adopted by the NICHD Governance group for use with all Pediatric Terminology projects. (Microsoft Excel 2007)
CDISC SDTM Laterality Terminology Subset  (tab-delimited text)
CDISC SDTM Laterality Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  (text)

Neonatal Research Network Terminology Subset: Terminology developed by a collaborative effort of the NICHD, the NCI EVS, and three additional neonatal research networks: Vermont-Oxford Network (VON), Children's Hospital Neonatal Database (CHND), the Neonatal Research Network (NRN) to support the reporting of neonatal events in research and the clinical setting. (Microsoft Excel 2007)
Neonatal Research Network Terminology Subset  (tab-delimited text)
Neonatal Research Network Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Neurological Development Terminology Subset: Terminology associated with neurological development in children contributed by the NICHD. (Microsoft Excel 2007)
Neurological Development Terminology Subset  (tab-delimited text)
Neurological Development Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Newborn Screening Terminology Subset: Terminology associated with neonatal and infant examinations contributed by the NICHD. (Microsoft Excel 2007)
Newborn Screening Terminology Subset  (tab-delimited text)
Newborn Screening Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Adverse Events Terminology Subset: Terminology developed by a collaborative effort of the NICHD, the NCI EVS, and an international group of clinicians and informaticists to support the reporting of adverse events in the pediatric population. An adverse event can be any unfavorable and unintended sign (including an abnormal laboratory finding), symptom, or disease temporally associated with the medical management, whether or not related to the medical management. (Microsoft Excel 2007)
Pediatric Adverse Events Terminology Subset  (tab-delimited text)
Pediatric Adverse Events Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Immunization Terminology Subset: Terminology associated with immunization in children (birth to 21 years of age) contributed by NICHD. (Microsoft Excel 2007)
Pediatric Immunization Terminology Subset  (tab-delimited text)
Pediatric Immunization Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Medical Device Terminology Subset: Terminology developed by a collaborative effort of the NICHD, the NCI EVS, and an international group of clinicians and informaticists to support the reporting of events related to medical devices commonly used in the pediatric population. (Microsoft Excel 2007)
Pediatric Medical Device Terminology Subset  (tab-delimited text)
Pediatric Medical Device Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Rheumatology Terminology Subset: Terminology developed by a collaborative effort of the NICHD, the NCI EVS, and an international group of clinicians and informaticists to support the reporting of events observed in clinical care and research in children and adolescents seen by experts in diseases of joints, muscles, and bones. (Microsoft Excel 2007)
Pediatric Rheumatology Terminology Subset  (tab-delimited text)
Pediatric Rheumatology Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Perinatal Terminology Subset: Terminology developed by a collaborative effort of the NICHD, the NCI EVS, and an international group of clinicians and informaticists to support the reporting of events during the perinatal period. (Microsoft Excel 2007)
Perinatal Terminology Subset  (tab-delimited text)
Perinatal Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Hierarchy  (text)

Spreadsheet column headers:

Spreadsheet Column Content Description
Column A: NCIt Code A unique, machine readable string that begins with a "C" and is followed by a series of digits; each concept in the NCIt has one concept code.
Column B: NCIt PT The Preferred Term, the most commonly used term for a particular concept. Each concept has one NCIt PT.
Column C: Subset PT The Preferred Term chosen by the working group members for a particular subset.
Column D: Subset SY The Synonym chosen by the working group members for a particular subset. A Synonym is considered to possess the same meaning as the Preferred Term within a particular concept.
Column E: NCIt Definition A statement of the meaning of a concept as defined by NCIt.
Column F: Subset Definition A statement of the meaning of the concept as defined by the working group members for a particular subset.
Column G: NCIt Code of First Parent The unique identifier assigned to the Pediatric Terminology parent concept.
Column H: First Parent A term chosen by NCI EVS to be the parent concept for purposes of a hierarchical representation.
Column I: NCIt Code of Second Parent The unique identifier assigned to the second Pediatric Terminology parent concept.
Column J: Second Parent A term chosen by NCI EVS to be the parent concept for purposes of a hierarchical representation.
Column K: NCIt Code of Subset The unique identifier assigned to the NICHD subset concept.
Column L: PT of NICHD Subset The Preferred Term chosen as the name of the Subset Association. Concepts belonging to a particular list of terms are linked by a subset association.
Column M: Subset Antiquated PT An antiquated preferred term chosen by the project working group. Typically, an antiquated term is included so that it appears in searches, but is designated as outdated to encourage the term's disuse.
Column N: Subset Antiquated SY An antiquated synonym chosen by the project working group. Typically, an antiquated term is included so that it appears in searches, but is designated as outdated to encourage the term's disuse.

Process

The database is reconciled the last Monday of every month; this is the database from which a production version is generated to correspond to the files posted on the ftp site. The files will be posted during the following two weeks. A listserv has been created that will contain monthly notifications when terminology has been updated. To subscribe to the listserv, sign up at https://list.nih.gov. The name of the listserv is evs-nichd-terms-l. Additional terms may be suggested at the Term Suggestion page; please indicate NICHD as the project.


Older files can be found on the following website (http://evs.nci.nih.gov/ftp1/NICHD/Archive)

Help requests on these files should go to NCIThesaurus@mail.nih.gov