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 Hematology-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.
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.
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.
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.
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 National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the efforts of the Neonatal Research Network.
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 developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the study of neurological development in children.
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 developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of events in the pediatric population that are related to endocrine disorders.
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 National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of adverse events in the pediatric population.
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 Adverse Events Terminology Mapped to MedDRA Terminology developed by a collaborative effort of the the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, Medical Dictionary for Regulatory Activities (MedDRA) MSSO, and an international group of clinicians and informaticists to support the reporting of adverse events in the pediatric population that have been mapped to MedDRA.
Pediatric Adverse Events Terminology Mapped to MedDRA  (tab-delimited text)
Pediatric Adverse Events Terminology Mapped to MedDRA Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text
MedDRA version  MedDRA version in text

Pediatric Endocrinology Terminology Subset Terminology developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of events in the pediatric population that are related to endocrine disorders.
Pediatric Endocrinology Terminology Subset  (tab-delimited text)
Pediatric Endocrinology Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Hematology-Oncology Terminology Subset Terminology developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, 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 blood disorders and cancer.
Pediatric Hematology-Oncology Terminology Subset  (tab-delimited text)
Pediatric Hematology-Oncology Terminology Subset Changes  (tab-delimited text, empty if no changes)
NCI Thesaurus version  NCI Thesaurus version in text

Pediatric Immunization Terminology Subset Terminology developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support immunization in children (birth to 21 years of age).
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 Infectious Disease Terminology Subset Terminology developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of events in the pediatric population with issues pertaining to infectious diseases.
Pediatric Infectious Disease Terminology Subset  (tab-delimited text)
Pediatric Infectious Disease 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 National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the use of medical devices in the pediatric population.
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 Nephrology Terminology Subset Terminology developed by a collaborative effort of the National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of events in the pediatric population with issues pertaining to nephrology.
Pediatric Nephrology Terminology Subset  (tab-delimited text)
Pediatric Nephrology 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 National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, 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.
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 National Cancer Institute's Enterprise Vocabulary Services, the National Institute of Child Health and Human Development, and an international group of clinicians and informaticists to support the reporting of events in the perinatal population.
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.

Additional column headers for the NCIt-MedDRA mapping file:

Spreadsheet Column Content Description
Column O: Target Term The NCI Thesaurus concept is mapped to the Target Term in the Target Terminology.
Column P: Relationship to Target The relationship between the NCI Thesaurus concept and the Target Term.
Column Q: Target Term Type The categorization of the Target Term as assigned by the Target Terminology.
Column R: Target Code The code assigned to the Target Term by the Target Terminology.
Column S: Target Terminology The source of the terminology mapped to the NCI Thesaurus.

 


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