The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry
Joint Authors
Ryerson, Christopher J.
Tan, Benjamin
Fell, Charlene D.
Manganas, Hélène
Shapera, Shane
Mittoo, Shikha
Sadatsafavi, Mohsen
To, Teresa
Gershon, Andrea
Fisher, Jolene H.
Johannson, Kerri A.
Hambly, Nathan
Khalil, Nasreen
Marras, Theodore K.
Morisset, Julie
Halayko, Andrew J.
Khan, Mohammad Adil
Kolb, Martin
Wilcox, Pearce G.
Source
Issue
Vol. 2016, Issue 2016 (31 Dec. 2016), pp.1-7, 7 p.
Publisher
Hindawi Publishing Corporation
Publication Date
2016-04-05
Country of Publication
Egypt
No. of Pages
7
Main Subjects
Abstract EN
Background.
The relative rarity and diversity of fibrotic interstitial lung disease (ILD) have made it challenging to study these diseases in single-centre cohorts.
Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning.
Methods.
The Canadian Registry for Pulmonary Fibrosis (CARE-PF) is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD.
CARE-PF will be used to (1) describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2) determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population.
Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years.
Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit.
Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases.
Conclusion.
CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients.
As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.
American Psychological Association (APA)
Ryerson, Christopher J.& Tan, Benjamin& Fell, Charlene D.& Manganas, Hélène& Shapera, Shane& Mittoo, Shikha…[et al.]. 2016. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry. Canadian Respiratory Journal،Vol. 2016, no. 2016, pp.1-7.
https://search.emarefa.net/detail/BIM-1103183
Modern Language Association (MLA)
Ryerson, Christopher J.…[et al.]. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry. Canadian Respiratory Journal No. 2016 (2016), pp.1-7.
https://search.emarefa.net/detail/BIM-1103183
American Medical Association (AMA)
Ryerson, Christopher J.& Tan, Benjamin& Fell, Charlene D.& Manganas, Hélène& Shapera, Shane& Mittoo, Shikha…[et al.]. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry. Canadian Respiratory Journal. 2016. Vol. 2016, no. 2016, pp.1-7.
https://search.emarefa.net/detail/BIM-1103183
Data Type
Journal Articles
Language
English
Notes
Includes bibliographical references
Record ID
BIM-1103183