The Danish severe asthma register: an electronic platform for severe asthma management and research

Susanne Hansen, Ole Hilberg, Charlotte Suppli Ulrik, Uffe Bodtger, Linda M. Rasmussen, Karin D. Assing, Alexandra Wimmer-Aune, Kirsten B. Rasmussen, Niels Bjerring, Anders Christiansen, Johannes Schmid, Niels Steen Krogh, Celeste Porsbjerg*

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review

6 Citations (Scopus)
45 Downloads (Pure)

Abstract

The evaluation and management of severe asthma patients require collection of comprehensive information, which is often a challenge in a busy outpatient clinic. The Danish Severe Asthma Register (DSAR) was designed as an electronic patient record form that captures operational clinical data and provides a clinical overview of the severe asthma patient. DSAR is a nationwide register; all patients in Denmark who are treated with biologics for severe asthma are included, and data are as a minimum entered at start of biological treatment, after four and 12 months of treatment, and hereafter annually. Currently, there are data from 621 treatment courses with biologics included in DSAR, with 71% of patients treated with anti-IL-5 drugs and 29% with an anti-IgE drug. Patients enter Patient Reported Outcome Measures electronically on tablets when they arrive in the outpatient clinic and their answers are immediately available to the clinician during the consultation. Nurses and doctors enter clinical data into DSAR during the consultation. DSAR offers immediate access to well-presented longitudinal overview and automatically creates a journal output that can be copy-pasted into the hospital’s existing health record form. DSAR is also currently expanding with an app, to be used for monitoring of home-treatment. In addition to serving as an electronic patient record form, DSAR will also provide opportunities to monitor the real-life efficacy of biological treatment for severe asthma in Denmark, and it will be a valuable research platform that will aid in answering important research questions on severe asthma in the future.

Original languageEnglish
Article number1842117
JournalEuropean Clinical Respiratory Journal
Volume8
Issue number1
ISSN2001-8525
DOIs
Publication statusPublished - 2021

Keywords

  • biological treatment
  • clinical decision-making tool
  • electronic patient record
  • real-life efficacy
  • Severe asthma
  • severe asthma research

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