Responsible use of data to improve the quality of care for people with CF

The registry is an important information resource that can be used to better understand the health, wellbeing and treatments received by people with cystic fibrosis. Nearly every person with cystic fibrosis in Ireland is on the registry. The health of about 1,300 individuals is tracked on the registry, many since 2002.

Researchers from recognised institutions can request aggregated or pseudonymised data from the CFRI to perform their own analysis for the benefit of people with cystic fibrosis. A listing of recent approved data applications is available here.CFRI also offer research project management and statistical analysis services. We will provide advice or perform data analysis as requested. Services are charged for, usually at an hourly rate. Authorship of a paper would be expected if there was a substantial intellectual or scientific contribution to the work and we follow the International Committee of Medical Journal Editors recommendations on this. Please ensure the relevant CFRI staff member(s) approve the manuscript/poster/presentation/abstract before submission.

Applicants wishing to request registry data can download and complete the CFRI Data Application Form. Please also read our Application Procedure, Use of Data, and Publication Policy pages.

A list of data variables collected by CFRI is available upon request.

Proof of Research Ethics Committee approval for your proposed study is required.

Requests are reviewed by the CFRI Scientific Research Committee and CFRI Executive Board.

Applications should be submitted to info@cfri.ie.