title: The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry.
abstract: 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.
authors.affiliation: Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6; Centre for Heart Lung Innovation, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6.
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: Ryerson
authors.affiliation: Centre for Heart Lung Innovation, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Tan
authors.affiliation: Department of Medicine, University of Calgary, Calgary, Canada.
authors.forename: Charlene D
authors.initials: CD
authors.lastname: Fell
authors.affiliation: Department of Medicine, University of Montreal, Montreal, Canada.
authors.forename: Hélène
authors.initials: H
authors.lastname: Manganas
authors.affiliation: Department of Medicine, University of Toronto, Toronto, Canada.
authors.forename: Shane
authors.initials: S
authors.lastname: Shapera
authors.affiliation: Department of Medicine, University of Toronto, Toronto, Canada.
authors.forename: Shikha
authors.initials: S
authors.lastname: Mittoo
authors.affiliation: Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6; Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Health Institute, Canada.
authors.forename: Mohsen
authors.initials: M
authors.lastname: Sadatsafavi
authors.affiliation: The Hospital for Sick Children, University of Toronto, Toronto, Canada.
authors.forename: Teresa
authors.initials: T
authors.lastname: To
authors.affiliation: Department of Medicine, University of Toronto, Toronto, Canada.
authors.forename: Andrea
authors.initials: A
authors.lastname: Gershon
authors.affiliation: Department of Medicine, University of Toronto, Toronto, Canada.
authors.forename: Jolene H
authors.initials: JH
authors.lastname: Fisher
authors.affiliation: Department of Medicine, University of Calgary, Calgary, Canada.
authors.forename: Kerri A
authors.initials: KA
authors.lastname: Johannson
authors.affiliation: Department of Medicine, McMaster University, Hamilton, Canada.
authors.forename: Nathan
authors.initials: N
authors.lastname: Hambly
authors.affiliation: Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6.
authors.forename: Nasreen
authors.initials: N
authors.lastname: Khalil
authors.affiliation: Department of Medicine, University of Toronto, Toronto, Canada.
authors.forename: Theodore K
authors.initials: TK
authors.lastname: Marras
authors.affiliation: Department of Medicine, University of Montreal, Montreal, Canada.
authors.forename: Julie
authors.initials: J
authors.lastname: Morisset
authors.affiliation: Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6.
authors.forename: Pearce G
authors.initials: PG
authors.lastname: Wilcox
authors.affiliation: Departments of Internal Medicine and Physiology and Pathophysiology, University of Manitoba, Winnipeg, Canada.
authors.forename: Andrew J
authors.initials: AJ
authors.lastname: Halayko
authors.affiliation: Boehringer Ingelheim, Burlington, Canada.
authors.forename: Mohammad Adil
authors.initials: MA
authors.lastname: Khan
authors.affiliation: Department of Medicine, McMaster University, Hamilton, Canada.
authors.forename: Martin
authors.initials: M
authors.lastname: Kolb
mesh_terms: D002170:Canada; D006801:Humans; D017063:Outcome Assessment, Health Care; D011446:Prospective Studies; D011658:Pulmonary Fibrosis; D012042:Registries