Creating a data dictionary for pediatric autonomic disorders.
Ontology highlight
ABSTRACT: Purpose
Whether evaluating patients clinically, documenting care in the electronic health record, performing research, or communicating with administrative agencies, the use of a common set of terms and definitions is vital to ensure appropriate use of language. At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders would be an important resource for multiple stakeholders.Methods
Our group created the list of terms for the dictionary. Definitions were prioritized to be obtained from established sources with which to harmonize. Some definitions needed mild modification from original sources. The next tier of sources included published consensus statements, followed by Internet sources. In the absence of appropriate sources, we created a definition.Results
A total of 589 terms were listed and defined in the dictionary. Terms were organized by Signs/Symptoms, Triggers, Co-morbid Disorders, Family History, Medications, Medical Devices, Physical Examination Findings, Testing, and Diagnoses.Conclusion
Creation of this data dictionary becomes the foundation of future clinical care and investigative research in pediatric autonomic disorders, and can be used as a building block for a subsequent adult autonomic data dictionary.
SUBMITTER: Boris JR
PROVIDER: S-EPMC9936127 | biostudies-literature | 2023 Jun
REPOSITORIES: biostudies-literature
Publications
Creating a data dictionary for pediatric autonomic disorders.
Boris Jeffrey R JR Abdallah Hasan H Ahrens Shelley S Chelimsky Gisela G Chelimsky Thomas C TC Fischer Philip R PR Fortunato John E JE Gavin Raewyn R Gilden Janice L JL Gonik Renato R Grubb Blair P BP Klaas Kelsey M KM Marriott Erin E Marsillio Lauren E LE Medow Marvin S MS Norcliffe-Kaufmann Lucy L Numan Mohammed T MT Olufs Erin E Pace Laura A LA Pianosi Paul T PT Simpson Pippa P Stewart Julian M JM Tarbell Sally S Van Waning Natalie R NR Weese-Mayer Debra E DE
Clinical autonomic research : official journal of the Clinical Autonomic Research Society 20230217 3
<h4>Purpose</h4>Whether evaluating patients clinically, documenting care in the electronic health record, performing research, or communicating with administrative agencies, the use of a common set of terms and definitions is vital to ensure appropriate use of language. At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders woul ...[more]
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