How did the Initiative originate?
Recognizing that the future of research will depend on harmonized terminologies to enable data sharing, data exchange and consistency, the NICHD identified the need to develop a harmonized pediatric terminology. In early 2009, NICHD initiated a prototype pediatric terminology project by establishing an inventory of existing terminology in the National Cancer Institute Thesaurus (NCIt), and an examination of publicly available resources. The preliminary survey and analysis identified gaps and inconsistencies among the sampled resources.
How will the community benefit from this effort?
The harmonization of terminology provides pediatric clinical researchers with an important resource to facilitate interoperability, and enable the comparison and aggregation of data and information across NICHD’s clinical research portfolio, across the portfolios of other NIH Institutes/Centers, and across those of the broader research community. In addition, harmonized terminology can facilitate the transfer of information between the health care delivery system and the clinical research system.
How do I know if I need to develop a terminology?
First, it is important to catalogue all the concepts of interest. Then, investigate if there is existing terminology that could be re-used or adapted to meet your needs. If no terminology exists that captures the concepts of interest, then you may want to consider developing a new terminology, or helping to expand an existing one.
What is the process for developing terminology?
Please refer to the Terminology Development Process section of the Web site for more detailed information.
What is the process for releasing the terminology?
The NICHD Pediatric Terminology is published in NCI Thesaurus (NCIt), which is a product of NCI Enterprise Vocabulary Services (EVS). NICHD terminology files are available for download from an NCI EVS ftp site (http://evs.nci.nih.gov/ftp1/NICHD) in three formats: as a text file, as an excel document and as an xml document. A textual 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 direct parent-child relationships within the NCI Thesaurus. NICHD Pediatric Terminology is also available for download in OWL format from the National Center for Biomedical Ontology (NCBO) BioPortal site.
How can the community get involved?
Initial requests to the community are for input on the development of a catalogue of concepts, and to request collaboration for identification of relevant terms. Subsequent review of the consensus terminology and input on updates and curation will then be requested.
If I use a specific system or tool for data integration and analysis, how does this fit in with the Pediatric Terminology Harmonization Initiative’s implementation?
The pediatric terminology can be leveraged by adopting Web-based clinical research resources that use harmonized concepts and definitions, regardless of what data integration or analysis tools an organization uses. The harmonized terminology will augment the use of such tools by minimizing time and effort to clean and edit data for aggregation prior to analysis.
How does the Pediatric Terminology Harmonization Initiative relate to NCI Thesaurus and other terminologies?
The NCI Thesaurus, published by the NCI Enterprise Vocabulary Services (EVS), is a reference terminology and biomedical ontology containing vocabulary for clinical care, translational and basic research, and public information and administrative activities. The NICHD project team referenced the NCI Thesaurus as various terms were developed for the pediatric terminology. If the NCI Thesaurus contains similar terms, these may be adopted for the effort. If the NCI Thesaurus does not have the specific pediatric term, this term may be added to NCI Thesaurus as part of the harmonization effort.
How can I learn more about this effort?
To learn more about this effort, please contact Dr. Steven Hirschfeld, the Associate Director for Clinical Research at NICHD (email@example.com).