PMID- 27445528
OWN - NLM
STAT- MEDLINE
DCOM- 20170310
LR  - 20191210
IS  - 1916-7245 (Electronic)
IS  - 1198-2241 (Print)
IS  - 1198-2241 (Linking)
VI  - 2016
DP  - 2016
TI  - The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National 
      Pulmonary Fibrosis Registry.
PG  - 3562923
LID - 10.1155/2016/3562923 [doi]
LID - 3562923
AB  - 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.
FAU - Ryerson, Christopher J
AU  - Ryerson CJ
AD  - 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.
FAU - Tan, Benjamin
AU  - Tan B
AD  - Centre for Heart Lung Innovation, University of British Columbia, 1081 Burrard 
      Street, Ward 8B, Vancouver, BC, Canada V6Z 1Y6.
FAU - Fell, Charlene D
AU  - Fell CD
AD  - Department of Medicine, University of Calgary, Calgary, Canada.
FAU - Manganas, Helene
AU  - Manganas H
AD  - Department of Medicine, University of Montreal, Montreal, Canada.
FAU - Shapera, Shane
AU  - Shapera S
AD  - Department of Medicine, University of Toronto, Toronto, Canada.
FAU - Mittoo, Shikha
AU  - Mittoo S
AD  - Department of Medicine, University of Toronto, Toronto, Canada.
FAU - Sadatsafavi, Mohsen
AU  - Sadatsafavi M
AD  - 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.
FAU - To, Teresa
AU  - To T
AD  - The Hospital for Sick Children, University of Toronto, Toronto, Canada.
FAU - Gershon, Andrea
AU  - Gershon A
AD  - Department of Medicine, University of Toronto, Toronto, Canada.
FAU - Fisher, Jolene H
AU  - Fisher JH
AD  - Department of Medicine, University of Toronto, Toronto, Canada.
FAU - Johannson, Kerri A
AU  - Johannson KA
AD  - Department of Medicine, University of Calgary, Calgary, Canada.
FAU - Hambly, Nathan
AU  - Hambly N
AD  - Department of Medicine, McMaster University, Hamilton, Canada.
FAU - Khalil, Nasreen
AU  - Khalil N
AD  - Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 
      8B, Vancouver, BC, Canada V6Z 1Y6.
FAU - Marras, Theodore K
AU  - Marras TK
AD  - Department of Medicine, University of Toronto, Toronto, Canada.
FAU - Morisset, Julie
AU  - Morisset J
AD  - Department of Medicine, University of Montreal, Montreal, Canada.
FAU - Wilcox, Pearce G
AU  - Wilcox PG
AD  - Department of Medicine, University of British Columbia, 1081 Burrard Street, Ward 
      8B, Vancouver, BC, Canada V6Z 1Y6.
FAU - Halayko, Andrew J
AU  - Halayko AJ
AD  - Departments of Internal Medicine and Physiology and Pathophysiology, University 
      of Manitoba, Winnipeg, Canada.
FAU - Khan, Mohammad Adil
AU  - Khan MA
AD  - Boehringer Ingelheim, Burlington, Canada.
FAU - Kolb, Martin
AU  - Kolb M
AD  - Department of Medicine, McMaster University, Hamilton, Canada.
LA  - eng
PT  - Journal Article
PT  - Multicenter Study
PT  - Observational Study
DEP - 20160405
PL  - Egypt
TA  - Can Respir J
JT  - Canadian respiratory journal
JID - 9433332
SB  - IM
MH  - Canada
MH  - Humans
MH  - *Outcome Assessment, Health Care
MH  - Prospective Studies
MH  - *Pulmonary Fibrosis
MH  - *Registries
PMC - PMC4904524
EDAT- 2016/07/23 06:00
MHDA- 2017/03/11 06:00
PMCR- 2016/01/01
CRDT- 2016/07/23 06:00
PHST- 2015/08/18 00:00 [received]
PHST- 2015/09/27 00:00 [accepted]
PHST- 2016/07/23 06:00 [entrez]
PHST- 2016/07/23 06:00 [pubmed]
PHST- 2017/03/11 06:00 [medline]
PHST- 2016/01/01 00:00 [pmc-release]
AID - 10.1155/2016/3562923 [doi]
PST - ppublish
SO  - Can Respir J. 2016;2016:3562923. doi: 10.1155/2016/3562923. Epub 2016 Apr 5.