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Patient registries for home oxygen research and evaluation

Authors Lacasse Y, Krishnan JA, Maltais F, Ekström M

Received 6 February 2019

Accepted for publication 17 May 2019

Published 18 June 2019 Volume 2019:14 Pages 1299—1304


Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Amy Norman

Peer reviewer comments 3

Editor who approved publication: Dr Richard Russell

Yves Lacasse,1 Jerry A Krishnan,2 François Maltais,1 Magnus Ekström3

1Research Center, Quebec University Institute of Cardiology and Pulmonology, Laval University, Québec, QC, Canada; 2Division of Pulmonary, Critical Care, Sleep and Allergy, Department of Medicine, University of Illinois at Chicago, Chicago, IL, USA; 3Faculty of Medicine, Department of Clinical Sciences Lund, Respiratory Medicine and Allergology, Lund University, Lund, Sweden

Abstract: Randomized clinical trials are the preferred study design to address key research questions about the benefits or harms of interventions. However, randomized trials of oxygen therapy are difficult to conduct and have limitations. The purpose of this article is to offer our view on the potential use of patient registries in the field of home oxygen in COPD as an alternative to randomized trials by referring to the Swedish experience with a national registry for respiratory failure. Patient registries use observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure. As opposed to administrative databases, patient registries serve one or more predetermined scientific, clinical, or policy purposes. By systematically and prospectively compiling relevant data, patient registries may describe the natural history of a disease, determine effectiveness and cost-effectiveness, assess safety or harm, and measure quality of care. Registry-based randomized trials (ie, randomized trials within a clinical registry) combine the advantages of a prospective randomized trial with the strengths of a large-scale all-comers clinical registry. Challenges and issues in the design and implementation of patient registries include the representativeness of participants, data collection, quality assurance, ownership, and governance. Notwithstanding their limitations, patient registries represent valuable tools in the conduct of research in the area of home oxygen therapy.

Keywords: patient registry, home oxygen, COPD, evaluation

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