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

Publikation: Bidrag til tidsskrift/Konferencebidrag i tidsskrift /Bidrag til avisTidsskriftartikelForskningpeer review

  • Susanne Hansen, Københavns Universitet
  • ,
  • Ole Hilberg, Syddansk Universitet
  • ,
  • Charlotte Suppli Ulrik, Københavns Universitet
  • ,
  • Uffe Bodtger, Syddansk Universitet, Sjællands Universitetshospital, Næstved Hospital
  • ,
  • Linda M. Rasmussen, Gentofte Hospital, Gentofte
  • ,
  • Karin D. Assing, Aalborg Universitet
  • ,
  • Alexandra Wimmer-Aune, Aalborg Universitet
  • ,
  • Kirsten B. Rasmussen, Sjællands Universitetshospital
  • ,
  • Niels Bjerring, Syddansk Universitet
  • ,
  • Anders Christiansen, Syddansk Universitet
  • ,
  • Johannes Schmid
  • Niels Steen Krogh, Københavns Universitet
  • ,
  • Celeste Porsbjerg, Københavns Universitet

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.

OriginalsprogEngelsk
Artikelnummer1842117
TidsskriftEuropean Clinical Respiratory Journal
Vol/bind8
Nummer1
Antal sider13
ISSN2001-8525
DOI
StatusUdgivet - jan. 2021

Bibliografisk note

Funding Information:
The Danish Severe Asthma Register is funded by grants from Glaxo Smith Kline, Novartis, AstraZeneca, Teva, and Sanofi. The authors would like to acknowledge Marcus Ross Christensen and Olivia Nielsson for entering the retrospective data; Pia H?iagaard-S?rensen for daily management of DSAR; secretaries, nurses, and doctors from the participating departments for taking active part in DSAR.

Publisher Copyright:
© 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

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