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, Pediatric Adverse Events Terminology and Perinatal Terminology were started; the Pregnancy and Childbirth Terminology subset was subsumed by the Perinatal Terminology subset and these terminology subsets were finished in 2014.
In 2015, Pediatric Rheumatology Terminology was completed and 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. An explanation for the CDISC (Standard Data Tabulation Model (SDTM) is located in the following link: ReadMe document. The actual subsets are located in the following link: SDTM spreadsheet.
Pediatric Nephrology Terminology, Pediatric Endocrinology Terminology, Pediatric Infectious Disease Terminology and Pediatric Hematology-Oncology Terminology were completed in 2016.
NICHD Pediatric Terminology files are available for download from an NCI EVS ftp site (https://evs.nci.nih.gov/ftp1/Pediatric_Terminologies/NICHD/ in two formats, an excel spreadsheet and a text file. The Pediatric Terminology file contains the entire set of terms related to all projects within the Pediatric Terminology. Additionally, individual subset files are provided in the tabs of the spreadsheet. All files contain the same column headers, except for the set mapped to MedDRA. The first tab in the spreadsheet is a set of links to all the worksheets with a brief explanation about the subset. The other worksheets include the following subsets:
Pediatric Terminology Subset: All of the 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.
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.
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.
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.
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 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 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 adverse events in the pediatric population that are related to pediatric disorders.
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 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 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 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 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.
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.
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.
| Spreadsheet Column | Content Description |
|---|---|
| NCIt Code of Subset | 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. |
| Peds Subset Preferred Term | The Preferred Term, the most commonly used term for a particular concept. Each concept has one NCIt PT. |
| NCIt Concept Code | The Preferred Term chosen by the working group members for a particular subset. |
| NCIt Preferred Term | 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. |
| Peds Preferred Term | A statement of the meaning of a concept as defined by NCIt. |
| Peds Synonym | A statement of the meaning of the concept as defined by the working group members for a particular subset. |
| NCIt Definition | The unique identifier assigned to the Pediatric Terminology parent concept. |
| Peds Definition | A term chosen by NCI EVS to be the parent concept for purposes of a hierarchical representation. |
| Spreadsheet Column | Content Description |
|---|---|
| Target Term | The term in the mapping database, in this instance, MedDRA |
| Relationship to Target | A relationship between the NICHD term and the MedDRA term has a relationship: Broader Than, Narrower Than, Has Synonym, Related To. |
| Target Term Type | Either a PT (Preferred Term) or an LLT (Lower Level Term). |
| Target Code | The MedDRA code associated with the term. |
| Target Terminology | The terminology name and version. |
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 (https://evs.nci.nih.gov/ftp1/Pediatric_Terminologies/NICHD/Archive) Archive
Help requests on these files should go to NCIThesaurus@mail.nih.gov