The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

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dc.contributor.authorRyerson, Christopher J.
dc.contributor.authorTan, Benjamin
dc.contributor.authorFell, Charlene D.
dc.contributor.authorManganas, Hélène
dc.contributor.authorShapera, Shane
dc.contributor.authorMittoo, Shikha
dc.contributor.authorSadatsafavi, Mohsen
dc.contributor.authorTo, Teresa
dc.contributor.authorGershon, Andrea
dc.contributor.authorFisher, Jolene H.
dc.contributor.authorJohannson, Kerri A.
dc.contributor.authorHambly, Nathan
dc.contributor.authorKhalil, Nasreen
dc.contributor.authorMarras, Theodore K.
dc.contributor.authorMorisset, Julie
dc.contributor.authorWilcox, Pearce G.
dc.contributor.authorHalayko, Andrew J.
dc.contributor.authorKhan, Mohammad Adil
dc.contributor.authorKolb, Martin
dc.date.accessioned2016-05-11T14:54:50Z
dc.date.available2016-05-11T14:54:50Z
dc.date.issued2016-4-5
dc.date.updated2016-05-08T09:31:43Z
dc.description.abstractBackground. 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.
dc.description.versionPeer Reviewed
dc.identifier.citationChristopher J. Ryerson, Benjamin Tan, Charlene D. Fell, et al., “The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry,” Canadian Respiratory Journal, vol. 2016, Article ID 3562923, 7 pages, 2016. doi:10.1155/2016/3562923
dc.identifier.urihttp://dx.doi.org/10.1155/2016/3562923
dc.identifier.urihttp://hdl.handle.net/1993/31289
dc.language.rfc3066en
dc.rightsopen accessen_US
dc.rights.holderCopyright © 2016 Christopher J. Ryerson et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
dc.titleThe Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry
dc.typeJournal Article
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