NYMC Faculty Publications

Creating a Data Dictionary for Pediatric Autonomic Disorders

Jeffrey R. Boris, Jeffrey R. Boris, MD LLC, P.O. Box 16, Moylan, PA, 19065, USA. jeffreyborismd@earthlink.net.
Hasan Abdallah, Children's Heart Institute, Herndon, VA, USA.
Shelley Ahrens, Mayo Clinic, Rochester, MN, USA.
Gisela Chelimsky, Children's Hospital of Richmond, Virginia Commonwealth University Health, Richmond, VA, USA.
Thomas C. Chelimsky, Virginia Commonwealth University Health, Richmond, VA, USA.
Philip R. Fischer, Mayo Clinic, Rochester, MN, USA.
John E. Fortunato, Lurie Children's Hospital, Chicago, IL, USA.
Raewyn Gavin, Starship Children's Hospital, Auckland, NZ, USA.
Janice L. Gilden, Rosalind Franklin University of Medicine and Science, North Chicago, IL, USA.
Renato Gonik, University of Florida College of Medicine, Gainesville, FL, USA.
Blair P. Grubb, University of Toledo, Toledo, OH, USA.
Kelsey M. Klaas, Mayo Clinic, Rochester, MN, USA.
Erin Marriott, American Family Children's Hospital, Madison, WI, USA.Follow
Lauren E. Marsillio, Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Marvin S. Medow, New York Medical College, Valhalla, NY, USA.
Lucy Norcliffe-Kaufmann, New York University Grossman School of Medicine, New York, NY, USA.
Mohammed T. Numan, University of Texas Houston McGovern Medical School, Houston, TX, USA.
Erin Olufs, University of Iowa Hospitals and Clinics, Iowa City, IA, USA.
Laura A. Pace, Metrodora Institute, Salt Lake City, UT, USA.
Paul T. Pianosi, University of Minnesota Medical School, Minneapolis, MN, USA.
Pippa Simpson, Medical College of Wisconsin, Milwaukee, WI, USA.
Julian M. Stewart, New York Medical College, Valhalla, NY, USA.Follow
Sally Tarbell, Northwestern Feinberg School of Medicine, Chicago, IL, USA.
Natalie R. Van Waning, University of Iowa Children's Hospital, Iowa City, IA, USA.
Debra E. Weese-Mayer, Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, IL, USA.

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.

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