Patient registries for home oxygen research and evaluation
Lacasse, Yves ; Krishnan, Jerrya ; Maltais, François and Ekström, Magnus LU
(2019)
In International Journal of COPD
14.
p.1299-1304
- 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... (More)
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.
(Less)
- author
- Lacasse, Yves
; Krishnan, Jerrya
; Maltais, François
and Ekström, Magnus
LU
- organization
- publishing date
- 2019-06-18
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- COPD, Evaluation, Home oxygen, Patient registry
- in
- International Journal of COPD
- volume
- 14
- pages
- 6 pages
- publisher
- Dove Medical Press Ltd.
- external identifiers
-
- scopus:85070363136
- pmid:31417247
- ISSN
- 1176-9106
- DOI
- 10.2147/COPD.S204391
- language
- English
- LU publication?
- yes
- id
- 7280325f-9d69-4eeb-912f-47b7abf97887
- date added to LUP
- 2019-08-26 16:09:17
- date last changed
- 2024-06-11 23:18:22
@article{7280325f-9d69-4eeb-912f-47b7abf97887,
abstract = {{<p>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.</p>}},
author = {{Lacasse, Yves and Krishnan, Jerrya and Maltais, François and Ekström, Magnus}},
issn = {{1176-9106}},
keywords = {{COPD; Evaluation; Home oxygen; Patient registry}},
language = {{eng}},
month = {{06}},
pages = {{1299--1304}},
publisher = {{Dove Medical Press Ltd.}},
series = {{International Journal of COPD}},
title = {{Patient registries for home oxygen research and evaluation}},
url = {{http://dx.doi.org/10.2147/COPD.S204391}},
doi = {{10.2147/COPD.S204391}},
volume = {{14}},
year = {{2019}},
}