NYMC Faculty Publications
Creating a Data Dictionary for Pediatric Autonomic Disorders
Author Type(s)
Faculty
DOI
10.1007/s10286-023-00923-3
Journal Title
Clinical Autonomic Research
First Page
301
Last Page
377
Document Type
Article
Publication Date
6-1-2023
Department
Pediatrics
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.
Recommended Citation
Boris, J. R., Abdallah, H., Ahrens, S., Chelimsky, G., Chelimsky, T. C., Fischer, P. R., Fortunato, J. E., Gavin, R., Gilden, J. L., Gonik, R., Grubb, B. P., Klaas, K. M., Marriott, E., Marsillio, L. E., Medow, M. S., Norcliffe-Kaufmann, L., Numan, M. T., Olufs, E., Pace, L. A., Pianosi, P. T., Simpson, P., Stewart, J. M., Tarbell, S., Van Waning, N. R., & Weese-Mayer, D. E. (2023). Creating a Data Dictionary for Pediatric Autonomic Disorders. Clinical Autonomic Research, 33 (3), 301-377. https://doi.org/10.1007/s10286-023-00923-3