Creating a data dictionary for pediatric autonomic disorders.

Autor: Boris JR; Jeffrey R. Boris, MD LLC, P.O. Box 16, Moylan, PA, 19065, USA. jeffreyborismd@earthlink.net., Abdallah H; Children's Heart Institute, Herndon, VA, USA., Ahrens S; Mayo Clinic, Rochester, MN, USA., Chelimsky G; Children's Hospital of Richmond, Virginia Commonwealth University Health, Richmond, VA, USA., Chelimsky TC; Virginia Commonwealth University Health, Richmond, VA, USA., Fischer PR; Mayo Clinic, Rochester, MN, USA.; Sheikh Shakhbout Medical City, Abu Dhabi, UAE.; Khalifa University College of Medicine and Health Sciences, Abu Dhabi, UAE., Fortunato JE; Lurie Children's Hospital, Chicago, IL, USA., Gavin R; Starship Children's Hospital, Auckland, NZ, USA., Gilden JL; Rosalind Franklin University of Medicine and Science, North Chicago, IL, USA., Gonik R; University of Florida College of Medicine, Gainesville, FL, USA., Grubb BP; University of Toledo, Toledo, OH, USA., Klaas KM; Mayo Clinic, Rochester, MN, USA., Marriott E; American Family Children's Hospital, Madison, WI, USA., Marsillio LE; Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, IL, USA.; Stanley Manne Children's Research Institute, Chicago, IL, USA.; Northwestern University Feinberg School of Medicine, Chicago, IL, USA., Medow MS; New York Medical College, Valhalla, NY, USA., Norcliffe-Kaufmann L; New York University Grossman School of Medicine, New York, NY, USA., Numan MT; University of Texas Houston McGovern Medical School, Houston, TX, USA., Olufs E; University of Iowa Hospitals and Clinics, Iowa City, IA, USA., Pace LA; Metrodora Institute, Salt Lake City, UT, USA., Pianosi PT; University of Minnesota Medical School, Minneapolis, MN, USA., Simpson P; Medical College of Wisconsin, Milwaukee, WI, USA., Stewart JM; New York Medical College, Valhalla, NY, USA., Tarbell S; Northwestern Feinberg School of Medicine, Chicago, IL, USA., Van Waning NR; University of Iowa Children's Hospital, Iowa City, IA, USA., Weese-Mayer DE; Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, IL, USA.; Stanley Manne Children's Research Institute, Chicago, IL, USA.; Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Jazyk: angličtina
Zdroj: Clinical autonomic research : official journal of the Clinical Autonomic Research Society [Clin Auton Res] 2023 Jun; Vol. 33 (3), pp. 301-377. Date of Electronic Publication: 2023 Feb 17.
DOI: 10.1007/s10286-023-00923-3
Abstrakt: 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.
(© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)
Databáze: MEDLINE
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