Creating a data dictionary for pediatric autonomic disorders

Jeffrey R. Boris*, Hasan Abdallah, Shelley Ahrens, Gisela Chelimsky, Thomas C. Chelimsky, Philip R. Fischer, John E. Fortunato, Raewyn Gavin, Janice L. Gilden, Renato Gonik, Blair P. Grubb, Kelsey M. Klaas, Erin Marriott, Lauren Elizabeth Marsillio, Marvin S. Medow, Lucy Norcliffe-Kaufmann, Mohammed T. Numan, Erin Olufs, Laura A. Pace, Paul T. PianosiPippa Simpson, Julian M. Stewart, Sally E Tarbell, Natalie R. Van Waning, Debra E. Weese-Mayer

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
JournalClinical Autonomic Research
StateAccepted/In press - 2023


  • Adolescent
  • Autonomic nervous system
  • Child
  • Health information
  • Medical informatics

ASJC Scopus subject areas

  • Endocrine and Autonomic Systems
  • Clinical Neurology


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