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Important recommendations for the research ethics system in Ireland - key to facilitating and supporting high quality research!

We had a great day in Cork on Tuesday, meeting with our friends at NISR Solutions to share learning, research & talking all things registries!

Woo hoo!! Well done Niamh! Cork Dental School CF Ireland Cystic Fibrosis Research Institute Cystic Fibrosis Registry of Ireland

DASSL (Data Access, Sharing, Support, Linkage) proof of concept report launched today by HealthResearchBoard. The entire health information system is in the room. Heavy emphasis on improving data quality and value of public engagement. We can do this.. hrb.ie/funding/approv…

CFRI are delighted to launch our report celebrating 20+yrs of collecting data on people with CF in Ireland. It covers key longitudinal data trends, the journey of CFRI and reflections on the future. Please do have a read & share amongst colleagues! cfri.ie/publications/

Excited to be at the North American Cystic Fibrosis Conference 2023, presenting results of the Irish Comparative Outcome Study Part 2. #nacfc #nacfc2023 #cysticfibrosis Patricia Fitzpatrick Cystic Fibrosis Registry of Ireland 3CF Children's Health Ireland University College Dublin UCD Public Health, Physiotherapy & Sports Science CF Ireland

CFRI's Laura Kirwan sits on the @ECFSRegistry Executive Committee & attended the recent meeting with the CTN executive committee to discuss joint research projects 👏

CFRI contribute to the @ECFSRegistry - take a look at their infographics to find out more about data trends across Europe #CysticFibrosis #CF #PatientRegistry

Did you know❓ 👉Alongside collecting & reporting data, we are involved in many other research projects 👉 Researchers can also request the use of our data in their own research projects 20 years & counting: cfri.ie/publications/ Data request process: cfri.ie/apply-for-data/

🥳To celebrate over 20 years of collecting data on people with #CysticFibrosis in Ireland, we launched our 20 years & counting report: cfri.ie/publications/ Over the coming days, we'll be posting about some of the key #Data trends from the report. Keep an eye out 👀

The value of #registry data is dependent on having good coverage of the Irish #CF population. In the early years, the registry worked hard to consent PWCF to the registry & since 2008, CFRI has consistently covered ~90% of the CF population. #CFRI20YearsAndCounting

Laura, our Head of Research, is a volunteer leader with the Brownies and Guides in Tullow. On Friday they got on their Christmas jumpers for CF and had a carol service, raising funds for @CF_Ireland #CJD4CF2023

❓ Did you know ❓ You can read & download all our annual reports & publications online. Annual reports: lnkd.in/eskgweJH Publications: lnkd.in/ePyskirY Want to learn more about what we do? Get in touch via 📧 - details on our website. #CysticFibrosis #Registry

Team Cystic Fibrosis Registry of Ireland look forward to joining in #CJD4CF during our virtual afternoon coffee break later - photos to follow!

Team Cystic Fibrosis Registry of Ireland supporting CF Ireland Christmas Jumper Day #CJD4CF2023 both remotely & in-person!