Using CFRI data to better understand CF
CFRI and its approved researchers produce high quality research that will advance the field of cystic fibrosis epidemiology. The research undertaken is scrutinised by experts in the field in a process known as peer review, which is the foundation of the scholarly publication system.
Peer-reviewed articles published by the CFRI are below. The CFRI contributes to European CF Society Patient Registry peer-reviewed articles.
- Associations between health literacy and patient outcomes in adolescents and young adults with cystic fibrosis. European Journal of Public Health, 2019.
- Longitudinal trends in real-world outcomes following initiation of ivacaftor: a cohort study from the Cystic Fibrosis Registry of Ireland. Annals of the American Thoracic Society, 2019.
- Epidemiology of CF: How registries can be used to advance our understanding of the CF population. Journal of Cystic Fibrosis, 2017.
- Estimating Direct Cost of Cystic Fibrosis Care Using Registry Healthcare Resource Utilisation Data, 2008-2012. Pharmacoeconomics, 2017.
- Co-colonisation with Aspergillus fumigatus and Pseudomonas aeruginosa is associated with poorer health in cystic fibrosis patients: an Irish registry analysis. BMC Pulmonary Medicine, 2017.
- Non-pulmonary chronic disease in adults with cystic fibrosis: analysis of data from the Cystic Fibrosis Registry. Irish Medical Journal, 2013.
- Validation and use of a parametric model for projecting cystic fibrosis survivorship beyond observed data: a birth cohort analysis’. Thorax, 2011.
- The application of current lifetable methods to compare median survival internationally is limited. Journal of Cystic Fibrosis, 2011.
- Delayed cystic fibrosis presentation in children in the absence of newborn screening. Irish Medical Journal, 2010.
A practical guide to developing patient registries in Ireland, which was co-authored by CFRI, is available from the Medical Research Charities Group website.