دورية أكاديمية
The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry
| العنوان: | The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry |
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| المؤلفون: | 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 |
| المصدر: | Canadian Respiratory Journal, Vol 2016 (2016) |
| بيانات النشر: | Hindawi Limited, 2016. |
| سنة النشر: | 2016 |
| المجموعة: | LCC:Diseases of the respiratory system |
| مصطلحات موضوعية: | Diseases of the respiratory system, RC705-779 |
| الوصف: | 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. |
| نوع الوثيقة: | article |
| وصف الملف: | electronic resource |
| اللغة: | English |
| تدمد: | 1198-2241 1916-7245 |
| Relation: | https://doaj.org/toc/1198-2241; https://doaj.org/toc/1916-7245 |
| DOI: | 10.1155/2016/3562923 |
| URL الوصول: | https://doaj.org/article/e3d7926777de4e0e940b84e3dc2934bf |
| رقم الأكسشن: | edsdoj.3d7926777de4e0e940b84e3dc2934bf |
| قاعدة البيانات: | Directory of Open Access Journals |
Full Text Finder | تدمد: | 11982241 19167245 |
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| DOI: | 10.1155/2016/3562923 |