The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry
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 det...
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| Format: | Article |
| Language: | English |
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Wiley
2016-01-01
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| Series: | Canadian Respiratory Journal |
| Online Access: | http://dx.doi.org/10.1155/2016/3562923 |
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| author | Christopher J. Ryerson Benjamin Tan Charlene D. Fell Hélène Manganas Shane Shapera Shikha Mittoo Mohsen Sadatsafavi Teresa To Andrea Gershon Jolene H. Fisher Kerri A. Johannson Nathan Hambly Nasreen Khalil Theodore K. Marras Julie Morisset Pearce G. Wilcox Andrew J. Halayko Mohammad Adil Khan Martin Kolb |
| author_facet | Christopher J. Ryerson Benjamin Tan Charlene D. Fell Hélène Manganas Shane Shapera Shikha Mittoo Mohsen Sadatsafavi Teresa To Andrea Gershon Jolene H. Fisher Kerri A. Johannson Nathan Hambly Nasreen Khalil Theodore K. Marras Julie Morisset Pearce G. Wilcox Andrew J. Halayko Mohammad Adil Khan Martin Kolb |
| author_sort | Christopher J. Ryerson |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-e3d7926777de4e0e940b84e3dc2934bf |
| institution | Kabale University |
| issn | 1198-2241 1916-7245 |
| language | English |
| publishDate | 2016-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Canadian Respiratory Journal |
| spelling | doaj-art-e3d7926777de4e0e940b84e3dc2934bf2025-02-03T01:25:45ZengWileyCanadian Respiratory Journal1198-22411916-72452016-01-01201610.1155/2016/35629233562923The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis RegistryChristopher J. Ryerson0Benjamin Tan1Charlene D. Fell2Hélène Manganas3Shane Shapera4Shikha Mittoo5Mohsen Sadatsafavi6Teresa To7Andrea Gershon8Jolene H. Fisher9Kerri A. Johannson10Nathan Hambly11Nasreen Khalil12Theodore K. Marras13Julie Morisset14Pearce G. Wilcox15Andrew J. Halayko16Mohammad Adil Khan17Martin Kolb18Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, V6Z 1Y6, CanadaCentre for Heart Lung Innovation, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, V6Z 1Y6, CanadaDepartment of Medicine, University of Calgary, Calgary, CanadaDepartment of Medicine, University of Montreal, Montreal, CanadaDepartment of Medicine, University of Toronto, Toronto, CanadaDepartment of Medicine, University of Toronto, Toronto, CanadaDepartment of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, V6Z 1Y6, CanadaThe Hospital for Sick Children, University of Toronto, Toronto, CanadaDepartment of Medicine, University of Toronto, Toronto, CanadaDepartment of Medicine, University of Toronto, Toronto, CanadaDepartment of Medicine, University of Calgary, Calgary, CanadaDepartment of Medicine, McMaster University, Hamilton, CanadaDepartment of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, V6Z 1Y6, CanadaDepartment of Medicine, University of Toronto, Toronto, CanadaDepartment of Medicine, University of Montreal, Montreal, CanadaDepartment of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, V6Z 1Y6, CanadaDepartments of Internal Medicine and Physiology and Pathophysiology, University of Manitoba, Winnipeg, CanadaBoehringer Ingelheim, Burlington, CanadaDepartment of Medicine, McMaster University, Hamilton, CanadaBackground. 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.http://dx.doi.org/10.1155/2016/3562923 |
| spellingShingle | Christopher J. Ryerson Benjamin Tan Charlene D. Fell Hélène Manganas Shane Shapera Shikha Mittoo Mohsen Sadatsafavi Teresa To Andrea Gershon Jolene H. Fisher Kerri A. Johannson Nathan Hambly Nasreen Khalil Theodore K. Marras Julie Morisset Pearce G. Wilcox Andrew J. Halayko Mohammad Adil Khan Martin Kolb The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry Canadian Respiratory Journal |
| title | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
| title_full | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
| title_fullStr | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
| title_full_unstemmed | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
| title_short | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
| title_sort | canadian registry for pulmonary fibrosis design and rationale of a national pulmonary fibrosis registry |
| url | http://dx.doi.org/10.1155/2016/3562923 |
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