Cystic Fibrosis Registry of Ireland

Mission & Goals

To provide for the relief of sickness, disease and human suffering and to advance education by facilitating and undertaking research and providing accurate reports in order to monitor and improve treatments which will contribute to the improving quality of care and outcomes of persons with cystic fibrosis. to identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with cystic fibrosis ("CF") in the State; to register all persons with cystic fibrosis ("PWCF") whose usual residence is in the State; to provide data on long term prognosis for CF patients in the State and to compare this information with international data; to compare CF management and treatment within the State and with best international practice standards; to ensure that all information is complete, accurate, timely and confidential; in order to effectively use the data