The CFRI Using Data for Good

Connecting with international colleagues in CF research and practice allows CFRI to maintain its high quality approach to data collection and research through learning and sharing best practice from both researchers and registries internationally.

From 7th – 10th June 2023, a team of three CFRI staff members travelled to to Vienna, Austria to participate in the European Cystic Fibrosis Society Conference 2023. We attended meetings relating to international collaboration projects including the global CF collaboration and the Pharmacovigilance group meeting as well as attending the European Cystic Fibrosis Society Patient Registry (ECFSPR) steering group meeting. In between meetings, we got to learn from international research and practice across a broad range of topic areas on the impact of modulators, pulmonary exacerbations and microbiology, and pregnancy and fertility amongst others. Att4ndin Attending the Attending the conference and learning from experts in the field ensures we can stay up-to-date on the latest research and remain fit-for-purpose.

We also presented a poster illustrating the value of 20 years of CFRI data (our report will be out soon so keep an eye out). ECFS is a highlight of our year and certainly demonstrates the value for CFRI in engaging and learning across borders. CFRI work across borders through engaging in the ECFSPR. Every year, we submit anonymised and summarised data to the ECFSPR, along with over 40 other countries. The ECFSPR includes summary data from over 50,000 PWCF across Europe.

“The information is used to measure, survey and compare aspects of CF and its treatment in participating countries, to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning1”

The ECFSPR is a powerful source of data on PWCF across Europe and is used to ultimately improve the outcomes of PWCF through informing research, clinical practice and public health planning. ECFSPR also publish an annual report and associate country posters which can be found here: https://www.ecfs.eu/ ecfspr/posters. Updated versions are currently being prepared by the ECFSPR team. The 2021 report has just been published and can be found here: https://www.ecfs.eu/projects/ecfs-patient-registry/annualreports.

Want to get involved? Consent

If you would like to participate in the registry, please contact your CF Centre of the CF Registry at info@cfri.ie Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time. If you have any questions about participating in the registry or about the data we collect, get in touch with us at info@cfri.ie.

1 https://www.ecfs.eu/ecfspr